Chronic Pelvic Pain
- Pain Is Never Normal
- Menstrual Cramps Are Never Normal
- Painful Intercourse Is Never Normal
- Pelvic Pain Is Never Normal
- Chronic Pelvic Pain Is Never “In Your Head” But Stress & Depression Makes Pain Worse
- Acute Pain Is A Symptom Of Disease
- Chronic Pain Is Itself A Disease
CHRONIC PAIN IS LIKE A DEFECTIVE FIRE ALARM – IT KEEPS SENDING A “SIGNAL” EVEN WHEN THERE IS NOTHING APPARENTLY WRONG
Twenty years ago, I would have told you that I knew everything there was to know about pelvic pain. Ten years ago, I would have told you that no one knew anything about pelvic pain. Today, I can tell you that we have learned a lot in the last few years. There is still a great deal to be learned. However, some major breakthroughs in our understanding of how the nervous system works has shed incredible light on previously poorly understood diseases.
Chronic pelvic pain is defined as either constant pain of three months duration or intermittent pain of six months duration. Pelvic pain is defined as pain anywhere from around your waist down to the level of the mid thigh regardless of whether it is in the front, in the back, in the sides, or any combination of these locations.
One of the problems in dealing with chronic pelvic pain relates to the old fable of the three blind men and the elephant. If you have forgotten it, three blind men come across an elephant. One grabs the trunk, the second grabs its tail and the third grabs a leg. Each man can only describe the elephant by the part he is holding. None of them can step back and view the entire animal.
For many years, people’s knowledge and understanding of chronic pelvic pain was limited by the fact that how you were diagnosed often depended upon which physician you saw first. If you were to see a gynecologist first, you would be told you have endometriosis or some other reproductive abnormality.
If you saw a urologist first, you would be told you have interstitial cystitis or painful bladder syndrome or some other term.
If you saw a gastroenterologist first, you would be told you have irritable bowel syndrome.
The fact of the matter is that when one part of your pelvis starts to hurt, eventually many things start to hurt. We may compartmentalize our diagnosis and treatment but to a certain degree this is artificial. Always keep in mind that most women with chronic pelvic pain have multiple reasons for their pain - we call these “pain generators”.
Also keep in mind that studies have clearly shown that women who suffer from chronic pelvic pain have a reproductive tract disease as the principal cause of their pain in only 20% of cases! This becomes all the more important when you stop to realize that most women with pelvic pain are going to end up in a gynecology office first. There is a very high probability that they will undergo a laparoscopy and they very likely will be told they have endometriosis. Endometriosis is the most common pelvic disease associated with chronic pelvic pain. Studies have clearly shown that about 75% of women with chronic pelvic pain have endometriosis.
Always keep in mind that just because you have endometriosis does not automatically mean that is the cause of your pain. Failure to understand that women with chronic pain have multiple pain generators often leads to repetitive treatments for endometriosis that may or may not address the true cause of the pain.
The principal causes of chronic pelvic pain are: endometriosis and other reproductive tract diseases such as chronic pelvic inflammatory disease; interstitial cystitis; vulvodynia and vulvar vestibulitis; irritable bowel syndrome; pelvic muscle pain; hernias; and abdominal wall trigger points.
Another major cause of pain is what we call neuropathic pain. It is our increased understanding of neuropathic pain that has allowed us to begin to unravel the mystery of chronic pelvic pain specifically and other chronic pain syndromes in general.
Neuropathic pain is explained in greater detail in the full pamphlet. However, it is important that you understand that in cases of neuropathic pain, the spinal cord itself becomes another pain generator.
Perhaps this is nowhere better illustrated than in the case of the so-called “phantom limb syndrome”. For various reasons, people may undergo an amputation of their leg. This is frequently related to complications of diabetes. Diabetics very frequently have neuropathies and may suffer from pain as a result. The pain itself is not the reason for the amputation - usually gangrene with uncontrollable infection is the cause.
Nonetheless, after the leg is amputated, it is not rare for the person to still “feel” the leg as if it were still there, often with pain. This is because of the neuropathic pain situation that has been created by long-standing chronic pain.
Another example of this involves the woman who has had an ovary taken out because she has pain on that side. Very frequently, she will complain that she still has exactly the same pain as if the ovary were still there. Since we now have a better understanding of what is going on, it allows us to counsel women that just because they may have pain on one side or the other, taking out that ovary is probably not going to relieve the pain.
Our understanding of neuropathic pain has also allowed us to understand the usefulness of many drugs that specifically target the nervous system rather than the “disease”. Perhaps the classic example of this is interstitial cystitis. We now recognize that in fact there is nothing intrinsically wrong with the bladder. The real problem with interstitial cystitis is neuropathic pain which sensitizes the bladder to normal stimuli. As a result, things that don’t bother “normal” people bother people with interstitial cystitis considerably.
The full pamphlet that follows goes into each of these issues in much greater detail. However, it is my hope that, by giving you this brief overview, you have a better understanding of what is going on and the reasons for how we approach your problems and how we try to deal with them.
Thirty million Americans live their life in chronic pain. One in every 7 women suffers from Chronic Pelvic Pain! At any one time, 12% of people in this country will report that they have chronic pain. One-third of all people will report that at sometime in their past they have had chronic pain. The evaluation and treatment of these people has, until recently, been one of the most neglected areas in medicine for a variety of reasons. First, until relatively recently, pain management was not a part of most physician’s training. Everyone knew about treating someone following surgery. The management of patients with long-term chronic pain was not well addressed.
There are a number of reasons for this. It is not that physicians don’t care. Part of the problem stems from what was our relatively poor understanding as to the causes of chronic pain. Recent discoveries in the way our nervous system functions have given great insight into some of these issues.
When I say that we don’t always understand the causes of pain, what I am really saying is that just because someone has an obvious problem such as endometriosis, it does not automatically mean that that is the cause of their pain. It is critically important to avoid falling into such a trap.
One of the reasons that chronic pain has not been managed as well as it should is physician fear. Until relatively recently (and it is still be true in some cases), physicians in some states actually lost their license to practice medicine because they were giving narcotics to patients with non-terminal illnesses. More recently, the Drug Enforcement Administration (DEA) issued a warning to physicians that they were going to look very carefully at physicians’ prescribing habits when it came to narcotics. This has to send a chilling effect throughout the country. This is despite the fact that the law specifically states that physicians should be able to prescribe narcotics when appropriate without fear of penalty.
The California board of medical licensure censured a physician because all that doctor would give a patient who was dying of cancer was Tylenol! If this is the way some physicians still think, imagine how people with non-terminal illnesses are treated. Undertreatment of pain is still a significant problem. I recently heard of a story of a GYN who calls himself an expert in endometriosis and yet sends his patients with chronic pain to a pain clinic. With all due respect, pain clinics are great for back pain and related problems — they do not do a very good job with pelvic pain.
In addition, there is also the physician fear (misplaced) that prescribing narcotics to patients with chronic pain will create a drug addict. In fact, this is uncommon. The vast majority of patients who are taking narcotics for chronic pain want desperately to be off them. They are not taking them for the same reason that a drug addict takes them. It has been estimated that perhaps only 5% of patients taking narcotics for chronic pain becomes addicted, using the strict psychiatric definition of the term. My own personal experience is that it is much less.
Another obstacle in the way of patients getting adequate pain relief are the many governmental and insurance company restrictions imposed on physicians in the prescribing of pain medication. Not only do I have to have a DEA license, I am forbidden to call in a prescription to a pharmacy for the more potent painkillers such as Percocet. The prescriptions must be in writing. I can phone in a prescription for drugs such as Vicodin or Tylenol with Codeine. While here is some justification for this, it does make it more difficult, particularly in an emergency situation.
More recently, insurance companies are making it more difficult for patients to get the medications they need by limiting the number of days of a drug that you can receive. For some insurances, such as Keystone, I can prescribe no more than a one month supply. The patient must then come back to my office for a refill. For patients on long-term medication, this is ridiculous. All it does is drive up the cost of health care and there is really no justification for it. I believe it is being done in the name of insurance company profit because when you examine the facts carefully, it doesn’t make any sense and probably ends up costing them more money.
I believe a lot of the restrictions are imposed by politicians who are trying to convince the voters that they are doing something meaningful to control illegal drugs. The fact is that the drug problem in our country has very little to do with physicians but we are a visible symbol and therefore become a target. Most of it is nothing more than political grandstanding and I cite the following example.
I have patients who come to me from New York State. If I write out a narcotic prescription for them, they cannot take that prescription back to New York to have it filled. In order to fill a narcotic prescription in New York, it must be written by a physician who is licensed in New York and it must be written on a special New York State narcotic prescription which is in triplicate. This regulation was imposed supposedly to control the diversion of narcotics into the hands of the drug dealers. It is effective? Absolutely not.
Several years ago, I was at a conference and heard a physician who deals a lot with pain management in cancer patients talk about this issue. The simple fact of the matter is that the street price of drugs such as Percocet in New York has not gone up one bit. In other words, the supply is still plentiful. All of these extra burdens imposed upon physicians and patients have not done one single thing to restrict the flow of illegal drugs but a lot of politicians got a lot of publicity trying to convince their constituents that they are doing something beneficial for society. So what else is new.
Everyone is familiar with the four standard “vital signs” - temperature, pulse, respiration rate, and blood pressure. Many people now feel that the assessment of pain should also be included as an important vital sign, especially for patients in the hospital. If someone with chronic pain undergoes surgery, it is critically important to make sure they have adequate pain meds after the surgery or their problem may actually worsen.
If you are suffering from chronic pain, I hope that this information does not depress you too much. However, I want you to be fully aware of some of the problems that we all face in attempting to help you get the relief you require.
CHRONIC PELVIC PAIN
Chronic pelvic pain is defined as either constant pain of at least 3 months duration or intermittent pain of 6 months duration.
A woman is said to have a “Chronic Pelvic Pain Syndrome” if she has chronic pelvic pain and she also has 1) – Incomplete relief with prior therapy; 2) – Pain out of proportion to the amount of visible disease or other objective findings; 3)- Psycho-social impairment (i.e., the pain interferes with other aspects of her life) and or 4)- There is multi-organ involvement. I can tell you that the vast majority of patients I see with Chronic Pelvic Pain have multiple causes for their pain.
As I will tell you over and over again, and as I have mentioned in other pamphlets, the most important thing in medicine is to make the right diagnosis. Although chronic pain does become a disease in and of itself, it is critically important to search for the causes of that pain. To the degree that the various causes can be identified and specifically treated, the entire problem can be more effectively dealt with.
It is also critically important for women who suffer from chronic pelvic pain to understand that the pain is primarily the result of reproductive tract disease only 20% of the time. The remainder of the cases involve pain originating in either the gastrointestinal tract, the urinary tract, the abdominal wall, the low back, or the pelvic muscles. Also, as I have mentioned, for the majority of women with chronic pain, they have more than one source for their pain (we call these “pain generators”).
Nonetheless, because of our knowledge and training, gynecologists are the most ideally suited physicians to diagnose the various causes of chronic pelvic pain and, in the majority of instances, we are also the best suited to treat those causes unless a significant problem is encountered in another organ system.
It is critically important, as will be discussed in greater detail later in this pamphlet, that you understand the following: namely, that in women, pain very often follows the menstrual cycle regardless of its cause. This is almost certainly due to the effect of the various hormones, especially estrogen and progesterone, on the nervous system affecting the way your body processes and perceives pain.
As a general rule, pain will be at its lowest right after your period has ended and it will worsen during the second half of the menstrual cycle following ovulation. The pain will usually be at its worst when you are premenstrual and during the first few days of your flow. Therefore, it is critically important that you always keep in mind that just because pain in the pelvis waxes and wanes with your menstrual cycle, it does not automatically mean you have endometriosis although that is the most common disease associated with chronic pelvic pain. (Notice I did not say that it is always the cause of chronic pelvic pain).
It is because of this effect of the various hormones on your body’s perception of pain that drugs such as Lupron will often relieve the pain. Because of this, many people assume that just because the pain goes away with Lupron, it must be endometriosis. This is not true. Many other causes of chronic pelvic pain will also improve on Depo Lupron therapy.
The same is true for any therapy that interrupts your normal menstrual cycle. Drugs such as continuous oral contraceptives, continuous Aygestin, continuous Provera, etc. may also have a significant beneficial effect on pelvic pain simply because they stop the cycling of the hormones and, therefore, any premenstrual accentuation of the pain will be eliminated or dramatically reduced.
Because of this, any disease a woman may have that causes her pain, etc. will very often wax and wane with her menstrual cycle, especially if that disease is accompanied by pain such as Rheumatoid Arthritis.
It is very important not to fall into the trap of concluding that just because a woman’s pain worsens with her menstrual cycle, it is due to Endometriosis or some other GYN disease.
12% of hysterectomies are done for chronic pain which adds up to about 70,000 hysterectomies a year. Of those women who undergo a hysterectomy for chronic pain, 25% will continue to have pain following the surgery. It will be less if women are properly selected.
PATHOPHYSIOLOGY OF CHRONIC PAIN
The term physiology refers to the normal functioning of a given body organ or system. The term pathophysiology refers to what happens to that organ or body system in a disease state. There have been some significant changes in our understanding of the way the nervous system works and this has given us much much better insight as to what is going on in patients with chronic pain, especially women with chronic pelvic pain. As I said on the first page of this pamphlet, chronic pain is a disease and we are now beginning to understand exactly why.
When I was in medical school, I learned there were two main parts to the nervous system - the somatic nervous system and the autonomic nervous system. Each of these is further subdivided into the motor part and the sensory part.
The somatic nervous system deals with the skin, muscles, bones, joints, ligaments, and related organs.
The autonomic nervous system (sometimes referred to as the “involuntary” nervous system) deals with your internal organs such as the heart, lungs, intestines, bladder, uterus, etc.
The motor part of each system sends signals from your brain to various parts of the body telling your muscles to do something or your intestinal tract to do something, etc. The sensory part of the nervous system sends a signal back to the brain from the various organs and tells you whether you are in pain, whether you feel heat, or cold, or whatever sensation you may be experiencing. It also provides feedback so the brain knows that your various systems are functioning normally.
Most importantly, I learned in medical school that the various nerves can only send their signals in one direction. Motor nerves send their message from the brain or spinal cord to various organs. Sensory nerves send signals from various organs to the spinal cord and brain. We now know this is not the case. Recognizing this has led to greater understanding of chronic pain. It also allows us to understand what is causing the pain and how to treat it better.
When you experience a sensation of any kind, a signal is transmitted up the sensory nerve into the spinal cord. That sensory nerve then interacts with other nerves and centers in the spinal cord that relay the signal up into the brain. In the spinal cord, there are various modulators (chemicals) that help control the intensity of the pain signal that is transmitted to your brain. It has recently been discovered that when someone is in chronic pain, these relay and controlling centers in the spinal cord become permanently “turned on”. They become self-perpetuating. This is termed “centralization” and the centers in the cord are said to be “up regulated”.
It has also been recently learned, contrary to what I was taught in medical school, that when these relay centers are up regulated, they will actually send signals back down the sensory nerves into the pelvis. As a result, the organs in which the sensory nerves originate become supersensitive to normal stimuli. It then becomes a self-perpetuating process. Sometimes the pain that results from these other supersensitized organs is worse than the initial pain that started the entire process.
This process occurs in all types of chronic pain syndromes. Because of this, the term “Complex Regional Pain Syndrome” has been created. Chronic nerve injuries that used to be called “Causalgia” was next called “Reflex Sympathetic Dystrophy” and we now realize that it one of these Complex Regional Pain Syndromes. Migraine headaches probably also fall into this category.
Supersensitivity to normal stimuli is now being increasingly recognized as a very common problem in the world of chronic pain and related syndromes. Gastroenterologists have realized for years that the Irritable Bowel Syndrome (IBS) is in fact a disease of supersensitivity. People who suffer from IBS have intestinal tracts that react in an exaggerated fashion to normal stimuli such as distention from either gas or stool. Normal people have what is termed the “Gastro-Colic Reflex”. When you eat, not too long thereafter, you feel the need to move your bowels. In people with IBS, this reflex is exaggerated. As soon as they eat, they feel a severe urge to run to the bathroom.
One of the most classic examples of this type of problem is so-called “Interstitial Cystitis”. I will discuss this more extensively in another section of the pamphlet. However, let me just mention here that IC is now believed to be simply part and parcel of an overall complex chronic pelvic pain syndrome with a bladder that has become supersensitized to normal stimuli as a result of the reversal of the flow of sensory information down the pain nerves.
Nerves from the body enter the spinal cord at each level between the spinal vertebrae. Not only are the nerves in the spinal cord affected at the level at which the pain nerves enter the cord, this process of up regulation can also affect spinal segments two or three levels higher than the original site of the input. This is one of the reasons why people will notice that, over time, the area that hurts gets larger and larger. Control centers at the higher levels also get turned on and start producing pain signals.
As the chronic pain persists, other defense mechanisms are also brought into play, specifically an increase in tension in the pelvic muscles. More often than not, women with chronic pelvic pain will have very tender, very tense pelvic muscles.
As the pelvic muscles hurt, then often the woman does not walk properly. Her abdominal muscles then begin to hurt and then her back will hurt. Very often people with chronic pain will develop what we call trigger points. Trigger points are isolated tiny areas of spasm in a muscle that also begin to hurt. This becomes another source of pain.
If the woman has had surgery, her incisions may also serve as sources of pain, particularly if she has developed a small hernia in one of those incisions. Again, newer information indicates that there are far more incisional hernias than we had previously appreciated, even in incisions that we normally do not associate with hernias such a the low transverse incision so commonly used for hysterectomies or cesarean sections. While vertical incisions are notorious for developing hernias, we are now becoming aware that transverse incisions will develop hernias far more frequently than we had previously believed to be the case.
In addition, especially if the woman has had a laparoscopy (as almost every women with chronic pain will have had), insertion of the laparoscopic ports may very often damage a nerve in the abdominal wall. That damaged nerve can then become a source of pain.
We call these various sources of pain “pain generators”. Each one contributes to the sensory input into the spinal cord and each one adds fuel to the fire in terms of up regulating the control areas in the spinal cord. It is not rare (in fact it is probably the rule) for women with chronic pelvic pain to have multiple pain generators. Very often the original problem that caused the pain in the first place is no longer the issue. It is the multiple pain generators that they have developed afterwards that keeps the problem going.
10-15 years ago, I would have told my patients that I knew everything there was to know about pelvic pain. Later, I would have told you that no one knows anything about pelvic pain. Today, because of newer information, we have a much better understanding of what is going on. However, it is still a very complex and often very challenging problem to deal with. Sometimes we can diagnose the problem — sometimes we can’t. Even if a laparoscopy shows a problem such as Endometriosis, it does not always mean that is the cause of the pain. Sometimes we are lucky and the woman’s pain is completely relieved. Sometimes, despite every treatment imaginable, the pain persists. It is frustrating.
If chronic pain is the stepchild of American medicine, chronic pelvic pain is an orphan. Millions of Americans live their lives in chronic pain from various injuries or illnesses. For a number of reasons which I can discuss with you in the office, many people with chronic pain are simply not treated properly.
Women with chronic pelvic pain often fare even worse. They have not been obviously injured and they often do not have diseases that would account for their pain. To be sure, almost all have other problems such as Endometriosis but the severity of the pain is often far out of proportion to the severity of the disease. As a result, these women have a great deal of difficulty getting their complaints taken seriously.
There is still a significant bias in the medical profession that women with pelvic pain are crazy until proven otherwise. Because a proper and accurate diagnosis is often not made, women with chronic pelvic pain are subjected to numerous surgeries and other therapies, often without success. Many end up having a hysterectomy and are in just as much pain after as they were before.
The three most common reasons that women seek GYN care are a vaginal discharge, bleeding abnormalities, and pain. Dealing with the first two is usually relatively simple and straightforward.
Pelvic pain was, and still is, principally the province of gynecologists. Although most pelvic pain is of GYN origin, there are a significant number of women whose pelvic pain is arising from some other source. Much of the misunderstanding arose from a situation similar to the parable of the three blind men and the elephant. One had a hold of the trunk, one had a hold of the leg, and the third had a hold of the tail. Each described the elephant by the part he was holding. None of them could step back and see the entire animal.
To a considerable degree, what you are diagnosed with as the cause of your pain may be a function of what type of physician you see first. If you see a Gynecologist, you will be told you have Endometriosis or Chronic PID. If you see a Gastroenterologist, you will be told you have Irritable Bowel Syndrome. If you see a Urologist, you will be told you have Interstitial Cystitis or a Painful Bladder Syndrome.
If you have several rectal pain and see a Proctologist or Colo-Rectal Surgeon, you will be told you have Proctalgia Fugax. It’s the blind man and the elephant — your have to be able to step back and view the entire problem, not focus on just one aspect of it. What you must realize is that the pain you are feeling often has nothing to do with the label you are given. What you must also realize is that all these chronic pain syndromes are intertwined and are usually part of the same overall complex pain syndrome.
Over the past decade or so, we have come to realize the importance of a multi-disciplinary approach to the woman with pelvic pain. As a result, we are now able to step back and see the entire picture even though each specialty, as you might expect, tends to focus on its own area of expertise.
What is becoming increasingly apparent to those of us who deal extensively with chronic pelvic pain is that many women have more than one problem. They may have started out with a single cause; frequently, however, other organ systems become involved and, without a multi-disciplinary approach, only a part of the problem is ever addressed and treated.
There are many causes of pelvic pain which I will mention briefly in this introduction. Each will be discussed more extensively later in the pamphlet. Virtually every study has shown that approximately 70% of women with chronic pelvic pain have Endometriosis. The problem is this - and it has directly or indirectly interfered with the proper diagnosis and management of pelvic pain - namely, that just because a woman has Endometriosis does not mean that that is the cause of her pain.
I have long believed (and current evidence has proven me correct) that sometimes making the diagnosis of Endometriosis is actually a disservice to the woman who is suffering from chronic pelvic pain. Once a woman is labeled as having Endometriosis, everything that happens to her from that point on is attributed to her Endometriosis. Many women with Endometriosis have other reasons for their pain and one must make a diligent search for those other reasons if you are going to help them.
In some cases, the other causes for her pelvic pain are indirectly related to the Endometriosis; frequently, however, the other causes are completely independent of the Endometriosis.
In addition to Endometriosis, the other relatively common causes of chronic pelvic pain include Adenomyosis (a first cousin to Endometriosis), pelvic damage from a previous infection, and pelvic damage from previous pelvic surgery – especially “open” surgery.
One of the most common causes of chronic pelvic pain is pain arising from the deep pelvic muscles and ligaments. This is frequently referred to as “pelvic floor dysfunction” or a pelvic myofascial pain syndrome. There is increasing evidence that this may in fact be a localized variant of fibromyalgia.
Another fairly common cause of chronic pelvic pain in women is a Spigelian hernia. Other hernias of the abdominal wall such as an inguinal hernia are also not rare.
Intestinal problems may cause chronic pelvic pain. However, most organic diseases of the intestinal tract are fairly easy to diagnose. Such diseases include Ulcerative Colitis and regional enteritis (Crohn’s disease).
Virtually every woman with chronic pelvic pain has been told, at least once in her life, that she has an irritable bowel syndrome (IBS), and to be fair, many do. This will be discussed extensively later in the pamphlet.
The urinary tract can also be a cause of chronic pelvic pain. Such conditions as the urethral syndrome and interstitial cystitis must be at least thought of in the differential diagnosis. We now have a much better understanding of them, how to diagnose them, and how to treat them.
Chronic pelvic pain can also arise from abnormalities in the lower back with pain radiating from the low back into the lower abdomen. Again, such pain may be a primary back problem or it may be secondary to other causes of pelvic pain such as Endometriosis.
The last topic which needs to be mentioned is whether or not pelvic pain is of psychological origin. There have been a number of papers showing a significantly increased incidence of sexual abuse in women who complain of chronic pelvic pain. A more recent study suggested that it was only women who had been abused as children who manifested chronic pelvic pain later in life. Women who were abused for the first time as adults did not seem to develop this type of problem. Much more data needs to be accumulated.
I have tried to present in this introduction a brief over view of the causes of chronic pelvic pain. The remainder of the pamphlet will discuss each topic in greater detail.
One of the biggest hurdles that women with chronic pelvic pain face is their never ending battle to get their complaints taken seriously, not only from the physicians they see but from the insurance companies who must pay for the care they require.
There are many ways to categorize pain. One way is acute vs. chronic. Most of the causes of acute pelvic pain are fairly easy to diagnose and the treatments are straightforward and well defined. Some of the more common causes include ovarian cysts, tubal pregnancies, bladder infections, and pelvic infections. The problem is diagnosed, treatment rendered, and the problem is usually resolved in a relatively short period of time.
Acute pain is usually due to a single cause. However, by the time women with chronic pain are fully evaluated, they frequently have multiple problems, each of which is contributing something to their overall pain syndrome. In addition, the severity and duration of the pain is such that the pain itself becomes as much an issue as the problems which created it. This is why we say that chronic pain is a disease in the same way as is the disease(s) which led to its development.
PAIN AND INFLAMMATION AND NEUROPATHIC PAIN
For those of you who are interested in the specific details, I would like to offer a more involved explanation as to what is going on. If you are not particularly interested, you can skip this section.
When most people think of inflammation, they think of the visible redness in the skin or joints that accompanies an insect bite, a cut that may have gotten superficially infected, severe arthritis, a rash, etc. However, the redness is only the visible manifestation of an underlying inflammatory response to an injury of any kind. The inflammation is mediated by numerous hormones and chemicals.
In today’s world, when a physician talks about inflammation, he or she is often referring to the actual biochemical inflammatory response that may or may not be manifest as visible redness. We are now coming to recognize that inflammation play a major role in many disease states. As we come to understand what inflammation is and how we can assess it, we are also developing drugs that will specifically target the inflammatory response.
For example, we now recognize that atherosclerotic cardiovascular disease is, in large part, an inflammatory disease. Atherosclerosis is the medical term for the deposition of fat in your blood vessels, commonly referred to as “hardening of the arteries”. If your blood vessels become to narrow as a result of this deposition of fat and you then rupture the plaque in which the fat deposits have been placed, the blood vessel becomes suddenly blocked and you have a heart attack or a stroke. A great deal of evidence has accumulated in the past few years that one of the key factors in promoting the deposition of the fat is inflammation.
We are now recognizing that asthma is an inflammatory disease. Many allergic conditions are inflammatory in nature and a whole host of other diseases are also considered to be, in not primarily an inflammatory disease then ones in which inflammation plays a major role. Such is the case of pain.
We are now able to identify and in many instances measure the various hormones and chemicals in our blood stream that are either markers of inflammation or may actually be the substances that cause the inflammation. One of the more widely known is C- Reactive Protein, commonly abbreviated as CRP. People with elevated CRP’s are known to be at increased risk for heart attack, further evidence that inflammation is in fact playing a role in heart disease.
As I previously noted, when there is a constant flow of pain sensation into the spinal cord, there is a prolonged release of various substances in the spinal cord that are involved in what we call neuroregulation. If these painful sensations are long enough and severe enough, the biochemical changes they produce in the spinal cord can become permanent. We call this “centralization”.
As I previously described, nerves enter the spinal cord at various levels between your spinal vertebrae. When centralization occurs at one level of the spinal cord, there is a change in other levels of the spinal cord above and below the site of the original input. This is called “expansion of receptor fields” and explains why the area over which a person feels their pain may be considerably larger than the area which originally caused the pain to begin with.
Two of the consequences of these biochemical changes are “Allodynia” and “Hyperalgesia” . Allodynia refers to a person perceiving as painful something that they should not. Hyperalgesia refers to someone feeling something as severely painful when most people would consider the stimulus to be mildly painful.
It is also important to understand that, particularly when dealing with your internal organs, pain sensation is carried on very thin nerves. All of these very thin nerves can transmit pain. However, anywhere from 30% to 80% of these thin nerves that come from your internal organs such as your uterus, bladder, intestines, etc. are “silent” - they are not doing anything. However, with prolonged stimulation, these silent nerves become active.
To help you better understand what is going on, it is also important to realize that the bladder has the highest concentration of these thin nerves of any of your internal organs and it has the highest proportion of the silent nerves of any of your internal organs.
As a result, the evidence now clearly indicates that when you have a pain sensation coming into the spinal cord, there is “centralization” and “up regulation”. As I previously described, the spinal cord itself then becomes the source of pain sensation which then travels in the “wrong” direction back down into the pelvis. We call this type of pain “neuropathic”.
As a result of this better understanding, we can now better understand what we call visceral pain syndromes and, for ease of description, they have been divided into a number of categories. Always keep in mind that there is tremendous overlap. Also keep in mind that the term visceral refers to your internal organs such as your uterus, bladder, intestines, etc. Somatic refers to the rest of your body including skin, muscles, bones, ligaments, etc.
The next section will describe these various neuropathic syndromes that we see.
Visceral Hyperalgesia - This refers to the increased sensitization to normal stimuli (hyperalgesia) commonly seen in these syndromes. Examples include the irritable bowel syndrome and interstitial cystitis. In reality, the pain of Interstitial Cystitis is, technically speaking, allodynia and not hyperalgesia.
Visceral Somatic Hyperalgesia - This refers to referred neuropathic pain from one organ to the external body parts that share the same nervous system distribution with that organ. Examples would be women with interstitial cystitis who also have vulvodynia (pain around the vagina and related areas).
Trigger points on the abdominal wall in women with chronic pelvic pain are another example of such a condition.
Viscerovisceral Hyperalgesia - This refers to pain arising in one organ making other organs more sensitive to pain. I have recognized for years that women with endometriosis very often have bladder symptoms similar to those women who have interstitial cystitis. This would be one example. Another would be the fact that women with interstitial cystitis frequently exhibit symptoms of irritable bowel syndrome.
Visceral Muscular Reflex - This refers to the increased tension frequently seen in your pelvic muscles as a result of pain arising in other nearby organs.
It is also critically important to keep in mind that the spinal cord has memory. As a result of centralization, even when the original insult that created the pain has been removed, many times the neuropathic responses that were set up in the spinal cord remain and it is necessary, usually with drug therapy, to reduce this super sensitivity to allow the spinal cord to return to a normal level of activity.
CHRONIC PELVIC PAIN IN MEN
The question that is often asked is whether or not there is a male equivalent to the chronic pelvic pain syndromes that we see in women. It does occur but it is much less frequent. Much of the pain that women experience relates to their reproductive tract. Men, at least those younger than 50, simply do not have the same types of problems with their reproductive systems that women do. Male reproductive problems tend to be more acute and short-lived.
There is one condition that affects predominantly younger men that appears to be the male equivalent of the chronic pelvic pain syndromes that we see in women. This condition is frequently referred to as “Prostatosis”. Men who have the problem complain of urinary frequency, urgency, etc. They also will complain of perineal pain. The perineum in women is the bridge of tissue between the rectal opening and the vaginal opening. It is the tissue that is cut during an episiotomy.
In men, the perineum is the area between the rectum posteriorly and the scrotum anteriorly.
Men with prostatosis will go to a urologist and initially it is felt that these men have prostatitis - an actual infection in the prostate gland. However, the cultures are all negative, semen smears are negative for infection, and there is no elevation in the white count or other laboratory evidence to substantiate an infectious diagnosis. Many of these men are given antibiotic therapies, often for a prolonged period of time. The results are frequently less than satisfactory. No one really knows exactly what causes prostatosis and, like chronic pelvic pain in women, these men frequently are very uncomfortable without a satisfactory solution for their complaints.
For the most part, however, men are protected from the chronic pelvic pain syndromes that afflict women. Men don’t have babies and the trauma inflicted on the pelvic floor during labor and delivery obviously will not occur as often in men. Men usually do not wear high heel shoes (I would be curious to know whether men who wear cowboy boots regularly have these problems). The abnormal pelvic tilt created by high heel shoes will frequently contribute to muscular pain in the deep pelvis. Nonetheless, these men do have pelvic floor problems although the cause is not always apparent. They do benefit from the same types of physical therapy that often is of help in women with these pain syndromes. Furthermore, except as already discussed, most diseases of the male reproductive tract will produce acute pain but not usually chronic pain.
Chronic pelvic pain, as common as it is, has often been the stepchild of gynecology. Until relatively recently, sometimes it was possible to make a very accurate diagnosis and initiate effective therapy — often it was not. Frequently women suffered with little chance of relief.
As a result of a much better understanding as to the causes of pelvic pain, women who were previously unable to be helped can now achieve significant relief of their symptoms.
This pamphlet is designed to inform you as to what is currently known about pelvic pain to help guide you in your search for a successful outcome. Based upon the numerous stories I have heard from my patients over the years, I know that for most women with chronic pelvic pain and Endometriosis, it is an uphill, frustrating battle to get the care you want.
A young woman came to me a number of years ago for a routine problem. As part of my usual history, I asked her whether her periods were painful and whether or not intercourse was painful. To each of these questions, she responded no. I was therefore somewhat surprised to discover that on pelvic examination, she was extremely tender.
I discussed the situation with her. Her husband was a sophomore medical student and I knew it would be several years before she was in a position to begin thinking about a family. Despite her negative history, her pelvic examination was extremely suspicious for Endometriosis. I therefore recommended a laparoscopy since I knew that she would be several years away from wanting to start a family. My laparoscopy did indeed confirm the diagnosis of Endometriosis.
When she came back to the office after her surgery to discuss my findings and recommendations for therapy, she surprised me with the following comment. “Dr. Birnbaum,” she said, “lied to you when I first came to the office. My periods are so painful I sometimes can’t stand it and intercourse is sometimes so painful that we have to stop in the middle.” I asked her why she had not shared this information with me when I first questioned her and her reply was quite astounding. She said, “I’ve been to 2 other gynecologists with the same complaints. They both told me it was all in my head. I was afraid that you were going to call me a nut too .”
As astonishing as this story may seem, it is, unfortunately, a story which I have heard repeated time and time again.
Just when I think I have heard the worst tale, another woman comes in the office with a story that goes one better. I have in my practice a young woman who came to me in her early twenties. She had one child that was born about two years before she came to see me. Prior to that time, she was pain free.
Following her delivery, she began to experience severe pelvic pain. She went to her OB/GYN. A laparoscopy was performed and she was told she had some adhesions but there were no other problems seen.
When her symptoms persisted, this same physician carried out another laparoscopy. My patient was told that her pelvic organs were normal and specifically that the OB/GYN had looked for Endometriosis and had not seen it.
When her pain persisted, she was started on Lupron. It had no significant affect on the pain but she was only on it for two months.
She then went back to her OB/GYN and told him that she was still having severe pain. He told her that, at that point, her only option was a hysterectomy - this for a young woman with only one child!
This woman came to me and asked for my help. Her symptoms were typically those of Endometriosis and a laparoscopy carried out about seven months after her previous laparoscopy showed obvious Endometriosis. Furthermore, although some of the Endometriosis implants were “fresh”, there were obvious areas of invasive disease in the deep pelvis and there were obvious areas of burned out Endometriosis with scarring on the pelvic sidewall.
Although there are always going to be exceptions in medicine, I find it almost impossible to believe that this woman did not have active visible Endometriosis at the time of the previous laparoscopy that was carried out before she came to me.
A number of years ago, I saw a woman who had had a laparoscopy by her OB/GYN who told her she did not have Endometriosis. That surgery was videotaped and the woman brought her tape to the office. I reviewed her tape with her and in the first five seconds of the tape, there were obvious implants of Endometriosis in the pelvis.
I have recited these stories to you so that you understand that I understand your frustration. If a woman goes to her OB/GYN, in pain, has a laparoscopy and is told that everything is normal, inevitably, she is going to start to question her own sanity. While there is no doubt that emotional stress will certainly worsen pain, regardless of its origin, I personally do not believe that any pelvic pain is psychosomatic. If it ever is, it is certainly quite rare. All one has to do is adopt the philosophy that if a woman is in pain, there has to be a reason for it and it is the physician’s responsibility to do whatever is necessary to establish the cause.
There is a bias that runs through the medical profession. This bias is that women are neurotic - men are not. A study published in the New England Journal of Medicine many years ago showed that if men and women went to a physician with identical complaints, the woman was more likely to be given a prescription for Valium whereas the man would be taken seriously and worked up for some illness. I have discovered in my years of practice that there is a great deal of organic disease masquerading as psychosomatic problems. While there is a common belief among some physicians that pelvic pain in women is mainly psychosomatic in origin, my experience is that very little pelvic pain is psychosomatic.
While there certainly appears to be a great deal of misunderstanding among physicians concerning pelvic pain, there seems to be an equally great misunderstanding among women. One common phrase that I hear in my office from my patients are words to the effect that “I have cramps with my period but they are just normal cramps”.
To better understand the whole process, and to be able to better read articles on the subject, several definitions are in order:
DYSMENORRHEA is the medical term for painful menstruation.
DYSPAREUNIA is the medical term for painful intercourse.
CHRONIC PELVIC PAIN is defined as pain, either constant or intermittent, of at least 6 months duration.
Pain is a peculiar phenomenon in medicine. It is possible to directly measure your temperature and determine whether or not you have a fever. It is possible to measure your blood count to tell whether or not you are anemic. There is, however, no measure for pain. It is a purely subjective sensation and is best described as simply any feeling which is unpleasant. It is, therefore, impossible for a physician to determine by any measurement how much pain someone is in and indeed the patient herself cannot compare the amount of pain she suffers with anyone else. Each person is their own control.
Furthermore, there is no question that emotional factors do influence a person’s perception of pain. If you are at a party and bang your leg on the table, you may not event notice it until you get home and see the bruise on your leg. However, if you are upset about something, even the smallest bump feels like a major injury.
Dysmenorrhea refers to any pain or discomfort or cramps or whatever that a woman experiences in relationship to her menstrual flow. I consider any degree of dysmenorrhea to be abnormal but it is the pattern of the pain in relationship to the flow — not its severity — that is of greatest importance in helping to decide what is causing the discomfort.
Until relatively recently, little was known about dysmenorrhea and therefore, numerous explanations were offered in an attempt to explain it. Teenage girls were told that they did not exercise enough. We know that exercise helps dysmenorrhea but by totally different mechanisms than anyone ever thought.
Women were sometimes told that their cervix was too tight (cervical stenosis) and many women underwent surgery to open the cervix in the hopes that this would relieve the discomfort. In fact, true cervical stenosis is quite rare. Women with dysmenorrhea rarely have it. All of these approaches were based upon what was then a lack of knowledge as to the true cause of dysmenorrhea.
In reality, there are many causes for dysmenorrhea and unfortunately, the names that we apply to these problems are misleading. The terms we use have been handed down from years gone by when very little was known about the physiology of menstruation. In essence, there are 2 types of dysmenorrhea — one that we call 10 dysmenorrhea or essential dysmenorrhea and the other is termed 20 or acquired dysmenorrhea. In reality, these are misleading terms because the symptoms can mimic each other and therefore serve only to confuse rather than illuminate.
Many teenage girls experience cramps with their periods. We now know that in many cases, these cramps are due to the increased production of a group of substances called prostaglandins. Prostaglandins derive their name from the prostate gland in men — the highest concentration of prostaglandin anywhere in nature is found in semen. It was therefore thought that prostaglandins originated solely from the prostate gland, hence the name. We now recognize that prostaglandins are found all over the body and play a major role in many body processes.
Prostaglandins are produced in the endometrium (the lining tissue of the uterus) and there are 2 principal types of prostaglandins produced by the endometrium. One type makes the uterus contract and go into spasm whereas the other type makes the uterus relax. The “spasm” prostaglandin is produced in excessive amounts in women with severe 10 dysmenorrhea and is only produced in these excessive amounts if ovulation has taken place.
In the teenage girl with 10 dysmenorrhea, i.e. increased prostaglandin production, the pain begins either coincident to the onset of the menstrual flow or perhaps 12-24 hours before - not longer. The cramps last for the first day or perhaps the first 2 days of the flow and then diminish rapidly and disappear by the third day.
Secondary or acquired dysmenorrhea means that some organic pelvic disease is causing the pain. Endometriosis is the most common cause of acquired dysmenorrhea, with the scar tissue and damage from either a previous pelvic infection or previous pelvic surgery as the next most common causes. Infrequent causes include congenital abnormalities of the reproductive tract. Adenomyosis is a fairly common cause but is usually only seen in women in their thirties and forties. Usually the pain of adenomyosis is annoying and troublesome but not as severe compared to the other problems already mentioned.
The term “Secondary dysmenorrhea” or acquired dysmenorrhea implies that the pain has to start later in life. In fact, for many teenage girls with Endometriosis, the pain begins at puberty. However, since the pain is the result of an organic disease, we call it “secondary”. The terminology is poor but everyone understands what is meant by it.
Again, as in the case of 10 dysmenorrhea, the diagnosis of 20 dysmenorrhea (when it begins at puberty or shortly thereafter) depends more on the pattern of the pain than the severity. A woman with organic pelvic disease can begin to experience her discomfort as long as 2 weeks before the onset of the flow and many women begin to experience their cramps 5-10 days before the flow starts. Furthermore, instead of diminishing rather rapidly once the flow begins, the pain associated with organic pelvic disease often lasts many days into the flow and can even last throughout the entire flow. The pain may even persist after the flow has ended.
Women with organic pelvic disease, particularly Endometriosis, may exhibit a pattern of their dysmenorrhea similar to that seen with 10 dysmenorrhea. In such situations, the history is obviously of little value. However, when a woman begins to experience pain more than a day or so prior to the onset of menstruation, this is always a sign of organic pelvic disease.
The location of the discomfort is also a clue as to its diagnosis. Since the uterus is a midline organ, the cramps of 10 dysmenorrhea are felt in the midline just above the pubic bone. It may also be felt in the midline of the lower back. Since organic pelvic disease can involve the entire pelvis, women with such a problem will often indicate that their pain is off to one side or the other as well as being in the midline.
The pattern of the pain also provides a useful clue. 10 dysmenorrhea is usually a crampy pain whereas organic pain is often more steady. However, there is sufficient overlap so that this is not a strong factor in making the diagnosis.
The overall history of dysmenorrhea also provides additional clues. The teenage girl with 10 dysmenorrhea begins to have discomfort either at the time of her first menstrual period or within a year or 2 after their onset. The 10 dysmenorrhea will persist throughout her teenage years but usually, by the time that woman reaches her early twenties, the pain begins to diminish.
A woman whose pain begins more than a year or so after her first menstrual period and whose pain remains significant throughout her twenties has organic pelvic disease. A woman who does not begin to experience any discomfort at all until after the age of 20 almost always has some organic pelvic problem.
Another very important clue to the presence of organic pelvic disease is the persistence of dysmenorrhea after the birth of a child or the appearance of dysmenorrhea for the first time after delivery. If a woman has primary dysmenorrhea, she will usually notice that the pain disappears completely or nearly so after childbirth. A woman who continues to experience significant dysmenorrhea after delivery usually has Endometriosis. Similarly, a woman who begins to experience dysmenorrhea for the first time after delivery also, in all likelihood, has Endometriosis or some other pelvic problem.
Endometriosis is the most common cause of dysmenorrhea in teenage girls. At one time, it was believed that Endometriosis did not occur in young women but was exclusively a disease of older women. That may have been more true at one time to a certain extent but as societal patterns have changed over the past generation or so and with the advent of newer diagnostic techniques such as laparoscopy, it was recently found that 70% of teenage girls with chronic pelvic pain had Endometriosis.
Usually on the basis of a woman’s history, I can determine rather quickly whether or not she has organic pelvic disease. If I strongly suspect chronic pelvic disease, then laparoscopy is indicated because it is essential to establish a proper diagnosis. Without a diagnosis in medicine, you cannot treat a patient. Sometimes, however, additional tests are sometimes indicated.
As I pointed out earlier, a woman produces excess prostaglandin from the endometrium only if ovulation has occurred. A simple test is therefore to put a young woman on birth control pills for 1 month. If her dysmenorrhea is the result of increased prostaglandin production, her pain will be completely relieved. This type of response to birth control pills allows one to make the diagnosis of 10 dysmenorrhea with a high degree of confidence and laparoscopy is not warranted at that time. If, however, the young woman indicates that the birth control pills only somewhat relieved her discomfort but that she still had considerable pain, this is almost proof positive that organic disease, most likely Endometriosis, exists.
The use of Motrin and other similar drugs as a help in diagnosis is not justifiable. Motrin works by inhibiting the production of prostaglandin. Therefore, it is often very helpful in women with 10 dysmenorrhea. However, prostaglandins play a role in all types of pain and therefore the fact that a woman may experience relief with Motrin does not rule out organic pelvic disease. Treating a woman with Motrin may relieve her symptoms but it does nothing to treat the underlying disease. Therefore the problem may get worse while the woman is under the misconception that something beneficial has been done for her simply because the pain has been relieved.
Dyspareunia - painful intercourse - is a fairly common symptom in gynecology. There are 2 principal types of dyspareunia: 1. pain on entry and 2. pain on deep penetration. Some women may experience pain both on entry and on deep penetration.
Entry pain can be the result of several possible causes. Usually, it is the presence of some local problem such as a vaginal infection or anything else that produces inflammation and irritation around the vaginal opening.
Vaginissmus is the term for spasm of the muscle at the vaginal opening. It is another cause of entrance pain. Vaginissmus may be due to solely emotional factors. The woman who is unable to relax enough to permit entrance of her male partner will naturally find it painful. The vaginissmus may be the result of some earlier childhood or adolescent trauma such as a rape, sexual abuse or similar problem. It may also be that woman’s silent communication to her partner that she really does not wish to have intercourse with him.
Many women come to me complaining of painful intercourse and have been told by previous physicians that their “vagina is too small”. Keep in mind that the vagina was designed to deliver a baby’s head and despite some wishful thinking on the part of some men, I do not believe that any woman is “too small”. I have personally never seen a woman with a too small vagina unless she has had previous surgery or a previous delivery. The one possible exception is a woman who is significantly estrogen deficient, either from a natural or surgical menopause. In such instances, the vagina will shrink and estrogen is necessary to help it re-establish normal functioning.
Another cause of entrance pain is lack of adequate lubrication. This is commonly seen in women after menopause unless they receive Estrogen Replacement Therapy. However, in younger women with adequate estrogen, failure to lubricate adequately is usually a psychological symptom-not a physical one. Lubrication in a woman is the sign of sexual readiness. A woman who has not properly lubricated is no more ready for intercourse than a man who has not yet achieved an erection. A woman who consistently fails to lubricate adequately is really communicating very silently but very loudly that she ought to re-examine the situation that she finds herself in. It may be that the woman is simply not ready to participate in a sexual relationship with anyone or it may be that she is not particularly fond of the man she is with and this is her way of letting herself and him know.
Less common causes of entry dyspareunia include Vulvar Vestibulitis and Essential Vulvodynia. These are uncommon but when they occur, they produce very severe pain.
Painful intercourse associated with deep penetration is always a sign of organic pelvic disease. Some of the causes I have already mentioned including Endometriosis, adhesions, etc. Another fairly common cause of deep pain is a urinary tract infection. Ovarian cysts, tumors, etc. comprise other causes of deep pain. There are numerous other causes-too numerous to list here-but suffice it to say that a cause must be searched for.
Some women have pain both on entry and on deep penetration. In many instances, these are women who have experienced deep pain and then are fearful the next time they try to enjoy intercourse that it will hurt as much as it did the previous time. They therefore naturally begin to tense up and the muscle around the vaginal opening contracts. Eventually, it may go into spasm. This then produces entry pain as well.
Pelvic pain is another common presenting compliant in gynecology. By pelvic pain, we are referring to the pain that women experience at times of the month other than her menstrual period. The pain may or may not be similar to her menstrual pain. It may be located differently than her menstrual pain. However, intermenstrual pain is almost always a sign of organic pelvic disease. Like acquired dysmenorrhea or deep dyspareunia, a cause must be searched for. Usually, women with intermenstrual pelvic pain also have other pelvic symptoms as well.
INTERSTITIAL CYSTITIS (IC)
OVER 80% OF WOMEN WITH OTHERWISE UNEXPLAINABLE CHRONIC PELVIC PAIN WILL ULTIMATELY BE FOUND TO HAVE INTERSTITIAL CYSTITIS
During the 1980’s and 1990’s, it was not rare for a woman to appear on Oprah or another similar program complaining that she had suffered for years and years and years and that finally, after much trial and tribulation, she was diagnosed with Interstitial Cystitis (IC). As part of her commentary, this woman would almost always say that IC was a very common disease and very much misdiagnosed.
Based upon the criteria for diagnosis that prevailed until relatively recently, her statements were incorrect. Based upon those older criteria and our lack of understanding as to what causes IC, it was considered to be a fairly rare disease even though it was still not diagnosed as often as it should have been.
With our better understanding as to what is really going on, we have now come to realize that IC is in fact a very common disease. The fact that you are reading this pamphlet indicates that I have told you that you probably have it. This pamphlet is designed to better educate you about what IC is and what you can do to help yourself.
To give you an example of how common IC is now recognized to be, one study showed that in a group of women undergoing laparoscopy for chronic pain because of suspected endometriosis, if they did not have endometriosis, 95% of those women were subsequently found to have IC.
Until recently, the diagnosis of IC had to be made at the time of cystoscopy - a very common urologic procedure in which a lighted instrument is inserted into the bladder. However, even previously, if you were to simply do a cystoscopy in the office, most women’s bladders would look normal. To diagnosis IC, the woman had to be put under anesthesia and her bladder would be filled with about a liter of water. This is far more than you could ever tolerate awake.
With the bladder over distended, the urologist would look for small areas of hemorrhage or ulceration in the wall of the bladder. Furthermore, small biopsies would be taken from the bladder wall and the number of mast cells counted.
Using those criteria, even then, only a relatively small number of women would be diagnosed with IC. I talk about women because the vast majority of patients with IC are women although it does occur in men.
As we have come to understand what causes IC, we realize that we were in fact missing many women with this disease. We now recognize that many many women have it. Unfortunately, it is still a very frustrating disease to treat.
IC is now recognized to be a “neuropathic pain disease”. This is explained in greater detail at the end of this pamphlet. Essentially, however, it simply means that for whatever reason, your nervous system has been “turned on” and you become super sensitive to normal stimuli. As an example, a “normal” person will feel the urge to urinate when they have perhaps 6 to 8 ozs. of urine in their bladder. A woman with IC will feel that same urge with only 2 or 3 ozs.
Your nervous system becomes super sensitized usually if you have been in chronic pain for some other reason. Sometimes the initial precipitating problem has been forgotten. However, over the years, if you are in chronic pain, the constant bombardment of the spinal cord with pain impulses causes the spinal cord to become inflamed (in the biochemical sense) and this sets the stage for the neuropathic pain.
It is important to understand that the bladder has the highest concentration of nerve fibers of any organ in the pelvis. When these nerves become super sensitive, the bladder pays a heavy price and you eventually develop the disease we call IC.
Based upon our current understanding of IC, cystoscopy is no longer even necessary to make the diagnosis. There are basically only three groups of women who need to have a cystoscopy as part of their evaluation for IC. The first are those women who have blood in their urine. The second are those women who have been treated for presumed IC and have not shown significant improvement. The third group are those women who develop their IC symptoms after menopause. The vast majority of women with IC start to have symptoms in their 20’s or 30’s - sometimes even younger.
The simplest and easiest way to diagnose IC is based upon a good history, a good physical examination, and the PUF questionnaire. PUF stands for Pain, Urgency, Frequency.
A woman with IC will complain of significant urgency - the need to run to the bathroom all the time even when there is very little urine in her bladder. She will frequently have to get up at night to urinate. This is a much more significant symptom in women who have never had children. Once a woman has had children, most have the need to get up to urinate at night because of the injuries to the pelvis that a woman suffers during labor and delivery (injuries that set the stage for IC).
Women with IC are frequently in pain although they don’t always have to be. Pain with intercourse is a very common symptom of IC. Many women will complain of lower abdominal pain - sometimes constant but sometimes intermittent.
In an attempt to minimize their bladder symptoms, many women will start to cut back on their fluid intake. This is another classic symptom of IC.
On physical examination, even mild pressure on the bladder wall will cause considerable discomfort.
The PUF questionnaire takes about 30 seconds to fill out. A “normal” woman with score less than 10 points on this questionnaire - most normal women will score only 1 or 2 points.
If a woman scores more than 10 points, she probably has IC. If she scores more than 20 points, she almost certainly has IC. Even women with a score of only 5 points have a 50/50 chance of having IC.
As I mentioned earlier, one of the hallmarks of IC is a super sensitized bladder. This can be tested for in the office by means of the “potassium sensitivity test”. Potassium is a very irritating substance. If you put potassium into the bladder of a normal woman, she will not know it is there. However, if you put a potassium solution into the bladder of a woman with IC, she will usually experience rather significant pain.
The test is performed by simply filling the bladder with water to establish a baseline. Both normal women and women with IC will not experience any pain.
The bladder is then drained and filled with a potassium solution. The woman with IC will often develop severe discomfort, even to the point of actual pain.
Although this is an easy test to do in the office, you must always keep in mind that the amount of pain generated by the potassium solution can be rather severe and you have to be prepared to put another solution into the bladder to “rescue” it.
Although there are some physicians who believe that the potassium sensitivity test is an important part of the work-up, studies have clearly shown that there is a very high degree of correlation between the score on the PUF questionnaire and the potassium sensitivity test.
Research has shown a significant correlation between your score on the PUF questionnaire and the likelihood of your having a positive Potassium Sensitivity Test. The actual numbers are as follows:
If you score between 10 and 14 points, you have a 74% chance of having a positive test.
If you score between 15 and 19 points, you have a 76% chance.
If you score over 20 points, the Potassium Sensitivity Test is positive 91% of the time.
One of the reasons for the potassium sensitivity test being positive in women with IC is damage to the lining of the bladder. Urine itself is a very irritating substance. It is rather acid and contains numerous proteins and other chemicals that normal cells don’t tolerate very well. As a result, a normal bladder has a thin coating that we call the “GAG” layer. In most (but not all) women with IC, the GAG layer breaks down and the cells of the bladder wall are exposed to urine. This further worsens the symptoms.
The treatment of IC involves trying to reduce the pain, reduce the urinary frequency, and reduce the irritation to the bladder wall. Obviously, this requires multiple therapies. Unfortunately, women with IC frequently end up looking like walking drug stores. Simple painkillers, often requiring narcotics, are one of the mainstay therapies of IC.
Reducing urine acidity and irritation is another important step. There is an over-the-counter medication that is sold for acid indigestion. However, it also makes the urine less acid and I strongly encourage you to get it. It is called Prelief. Many pharmacies do not carry it but they can order it for you. If the pharmacy doesn’t have it or can’t get it, you can call the company directly at 1-800-994-4711.
Another way to reduce urine irritation is to alter your diet and eliminate those foods and other substances that make the urine far more irritating. The Interstitial Cystitis Association’s website has a long list of such foods. It doesn’t mean that every woman is going to respond adversely to every food on the list but it will give you some ideas as to how you can modify your diet. One of the more irritating foods is coffee. Many women are simply not willing to give up their morning cup of coffee. They just have to understand that their bladder will pay a price for that.
There are cells in the wall of the bladder called mast cells and they contain histamine. When the mast cells are triggered to release their histamine, this also creates significant bladder irritation and pain. The simple over-the-counter antihistamine Benadryl can often be very effective in helping with this problem. The newer antihistamines such as Claritin or Zyrtec are not effective. It must be the older antihistamines.
As I mentioned earlier, IC is a neuropathic pain syndrome. There are specific drugs that help calm your nervous system down. Elavil and Neurontin are two of the more commonly prescribed drugs. Cymbalta also has been shown to be of some benefit. Unfortunately, these drugs also have side effects and many women cannot tolerate them. However, if you can tolerate them, they will significantly help your symptoms.
One of the more important therapies is to help the body replenish and repair the GAG layer. Elmiron is a drug that has been shown to do this. It takes 3 to 6 months for the Elmiron to work so you cannot expect an overnight success. However, with time and perseverance, although we may not be able to completely eliminate your pain, hopefully, we can reduce it to a point where it is no longer a significant issue in your life.
Part of the confusion about IC stems from the fact that only a very small percentage of women with the classic symptoms of IC will have the typical findings when a cystoscopy is performed. Since these women will have a normal looking bladder, they will be told they do not have IC and they will suffer needlessly.
Perhaps the term IC should be relegated to the history books. Painful bladder syndrome is a much better term and it accompanies all women with the symptoms whether or not their bladders look abnormal.
The most important thing to understand about IC is that it is not a disease of the bladder - it is a disease of the nervous system. It is the result of a spinal cord that has been up regulated and, as a result, neuropathic pain sensation is being transmitted into the bladder along those networks of pain fibers that I mentioned previously.
The bladder contains a large number of special cells called “mast” cells. Mast cells contain large amounts of histamine which is a very irritating substance and can cause many nasty symptoms. People who suffer seasonal allergies know full well what histamine does to your respiratory tract. Think of what it can also do to your bladder.
We have also now come to realize that each mast cell has its own separate nerve fiber. Therefore, when the nervous system becomes activated, these mast cells are stimulated and they release histamine. This is one more piece of evidence that IC is in fact a nervous system disease.
Women with a painful bladder syndrome, regardless of what their bladder looks like at the time of cystoscopy, are all treated in the same way. Therapy is directed at, first of all, reducing the overall level of pain coming from all the pain generators that have been identified. Additional medications to specifically target the bladder are used. The bladder itself is lined with a peculiar mucoid substance that we call the GAG layer and this is often absent or significantly diminished in women with IC. Drugs such as Elmiron are very helpful in getting the bladder to regenerate its GAG layer. One of the functions of the GAG layer (perhaps the function of the GAG layer) is to protect the cells of the bladder from irritating substances in the urine. Without the GAG layer, these various substances irritate the bladder wall significantly. The problem is made all the worse because of the changes in the nervous system such that the woman responds in a heightened fashion to mildly irritating substances.
One of the tests that you may read about for IC is a potassium sensitivity test. If you put a weak solution of potassium chloride into a normal bladder, the woman will not notice any significant discomfort. However, if you put potassium chloride into a bladder of a woman with IC, she will experience severe pain. This is just one more manifestation of the fact that the bladder is now responding in an exaggerated way to otherwise innocuous stimuli.
Because the mast cells are being stimulated to release histamine, antihistamines are also of considerable benefit. Unfortunately the newer, non-sedating antihistamines do not seem to work as well as the old original antihistamines such as Benadryl but they are of considerable benefit.
Drugs that simply slow down the bladder are also of benefit in helping control some of the symptoms of IC.
Drugs that we use to treat all chronic pelvic pain patients that help reduce the level of activity in the spinal cord are also of considerable benefit in the treatment of IC.
Lastly, specific diets that avoid substances that we know are irritating to a sensitized bladder are also of benefit. The Interstitial Cystitis Association’s web site has extensive lists of foods that you should avoid.
Unfortunately, when all is said and done, treating IC is a frustrating process. It will take 3 to 6 months at a minimum for you to notice any significant improvement in your bladder symptoms. Always keep this in mind and you must give the medications a chance to work if you are going to achieve any benefit.
No one knows for sure how common IC really is. If you are a purest and demand strict criteria, true IC is uncommon. Nonetheless, there are many women who have the symptoms of IC and who may be just as debilitated as if they had the true disease. Such women are frequently termed as having a “painful bladder syndrome” which is probably one part of the overall spectrum of painful bladder symptoms - IC being the most extreme. Based on the PUF score, IC may afflict as many as 5% of all women. It is far more common than we had ever believed to be the case.
Whether or not you make a definitive diagnosis of IC, women with a painful bladder syndrome will be treated the same anyway. The purpose of the therapy is to reduce the need to run to the bathroom all the time and to reduce the severity of the bladder symptoms. There are several approaches that have varying degrees of success.
There is a drug called Elmiron that was specifically designed for the treatment of IC. It takes several months before a woman will begin to notice any beneficial effect and, even then, even in women with true IC, the results are not always that great.
The use of low dose tricyclic antidepressants such as Elavil, Tofranil, or Pamelor also can be extremely beneficial in the treatment of the painful bladder syndrome. More recently, a new drug – Cymbalta – may also be used. These drugs are given in doses far lower than would normally be used to treat depression. They have their beneficial effect because they modify and modulate the way your brain processes pain. Quite simply, the pain from the bladder doesn’t bother you as much.
Neurontin is another drug that is often used to treat nerve related pain and some women with a painful bladder syndrome will also respond to this drug as well.
Biofeedback has also been shown to be of considerable value in the treatment of a painful bladder.
Bladder instillations of DMSO can also help relieve some of the symptoms but it is therapy that must be done repetitively.
Numerous other medications have been put into the bladder in an attempt to relieve the symptoms. Unfortunately, none of them are particularly effective although occasional patients do claim to get relief.
One therapy that has absolutely no place in the treatment of any painful bladder syndrome is surgery. I have seen several women over the years who have had portions of their bladder removed or other types of surgery carried out on the bladder in an attempt to help their symptoms. Not only are such therapies uniformly unsuccessful, these women were almost always worse. I actually saw one woman who had a complete removal of her bladder. Her pain was not relieved. – not surprising based on what we now know about neuropathic pain.
The bottom line - if you have these kinds of issues and someone recommends a surgical procedure to correct it, run as fast as you can in the opposite direction.
The only way to definitively diagnose IC is a cystoscopy under anesthesia. During this procedure, the urologist will look inside the bladder. However, this type of cystoscopy must be done under anesthesia because the definitive test involves distending the bladder with very large amounts of water. It would be far too painful to do this while you are awake.
If a woman truly has IC, the bladder wall develops multiple tiny hemorrhages during the distention. Also, sometimes the urologist can see small ulcers in the bladder wall and, depending upon how far they wish to go, small biopsies of the bladder wall may be taken. If the woman truly has IC, the biopsy will show a significantly increased concentration of mast cells. These are cells that play a significant role in the inflammatory process.
Whether or not you wish to undergo such a procedure is a personal decision. Keep in mind that, even if a definitive diagnosis of IC is made, it is not going to change the therapies all that much. The treatment would be the same for a woman with a painful bladder syndrome whether or not she has been definitively diagnosed with IC.
At one time, the diagnosis of IC was made based on the appearance of the bladder at the time of cystoscopy. The bladder would be over distended with water and little ulcers or other abnormalities in the bladder wall would be identified. Biopsies would be taken of the bladder wall.
We have women who had a negative cystoscopy and were told they did not have IC and continued to suffer.
We now recognize that cystoscopy aids in the diagnosis but is really not essential. The use of the PUF (Pain, Urgency, Frequency) questionnaire along with a pelvic examination looking for bladder tenderness is a highly accurate way of diagnosing IC. Furthermore, many women will have all the symptoms of IC with a negative cystoscopy. This in no way negates the diagnosis. I will sometimes have a woman undergo a cystoscopy if I happen to be doing a laparoscopy for various reasons. However, I see many patients who do not require laparoscopy yet I have absolutely no hesitation in making the diagnosis of IC and treating them.
The following section (in italics) is what I had previously written a number of years ago based on the information available at that time. It is amazing how much we have learned in the past few years about this problem. I include this so you can see how our thinking has changed.
Diseases of the urinary tract commonly produce pelvic pain in women. Furthermore, women with chronic pelvic pain very often have urinary symptoms and this makes establishing an accurate diagnosis all the more difficult.
Usually the symptoms are quite unmistakable and a proper diagnosis is easy to make. Occasionally, however, urinary tract symptoms may be so subtle as to mislead the physician and the appropriate diagnosis becomes apparent only with proper testing. Rarely, pelvic disease may masquerade as urinary tract symptoms. I have seen several women in my practice with significant bladder discomfort, urinary frequency, urgency and painful urination. However, these women had been to numerous urologists with numerous investigations-all of which were negative.
Interestingly, these women all had Endometriosis or Adenomyosis. After thinking about it, I have come up with the following explanation for these women. It is well known that pain involving the skin, muscles, bones, etc., can be very precisely located by the person feeling that pain. If you cut your finger, you know exactly where it hurts. However, pain from internal organs is much more vague, much more diffuse and much less precisely located. Furthermore, it is a natural instinct when you have discomfort to try to get rid of it. If you have discomfort in the intestinal tract, you often try to move your bowels in an attempt to relieve that discomfort.
It is my feeling that these women were feeling pelvic discomfort and this discomfort was so poorly localized in her mind’s perception, that they could not determine that it was of GYN origin. Furthermore, many of these women began to urinate frequently in an attempt to simply relieve the discomfort they were experiencing.
In all cases, these women underwent hysterectomy with complete relief of their urinary tract symptoms. Although this is an uncommon problem, it is interesting and provides some useful insights into the way the body functions.
There is one problem, thankfully rare, that can be a crippling cause of pelvic pain - namely, Interstitial Cystitis (IC). IC is a bladder problem for which no one understands the cause. The symptoms are lower abdominal pain, urinary frequency and urgency, and the inability of the bladder to retain more than a small amount of urine.
The problem with IC is that it is frequently over diagnosed. Several years ago, a woman with IC, whose diagnosis had not been properly made, wrote a book. The implication of the message in her book is that thousands of women have IC that is undiagnosed and are, therefore, suffering needlessly. This is not true.
Every few years, someone writes a book or gets on one of the talk shows such as “Oprah” and describes her many years of suffering with IC until someone made the right diagnosis. The implication is that there are millions of women running around with undiagnosed IC who are suffering needlessly.
There is no doubt in my mind that IC is more of a problem than is usually appreciated but it is not as common as these books would have you believe. Furthermore, I have seen women in my practice who were told that they had IC by some “experts” who in fact did not have this disease.
Pain from the intestinal tract, particularly the large intestine, is felt across the lower abdomen. Usually, as with the bladder, the symptoms are rather distinctive and a proper diagnosis is easy to arrive at. There is usually an associated change in bowel habits, etc.
One fairly common problem, especially in older women, which is often difficult to distinguish from GYN disease is diverticulitis. Diverticulosis is almost a universal problem in older people, particularly in our Western culture. One of the principal causes of diverticulosis is inadequate fiber in the diet. Diverticulosis is rarely seen in third world countries where high fiber diets are common.
Diverticulosis is a condition involving the large intestine where tiny grape-like sacs form through tiny herniations in the bowel wall. Diverticulosis, in and of itself, produces no symptoms. However, sometimes these tiny diverticuli become blocked off and then become infected and inflamed. The inflammation and infection which results in termed diverticulitis. An attack of diverticulitis commonly produces pain in the left lower part of the abdomen and therefore in a woman with left sided pain, the problem may be GYN or it may be intestinal. One clue as to the proper diagnosis is the age of the woman. Diverticulitis is usually seen in women after menopause when GYN causes of pain would be less commonly seen.
Irritable Bowel Syndrome
Irritable Bowel Syndrome is one of the more common causes of chronic pelvic pain. A great deal of confusion has developed over the years concerning this entity, principally because most women with pelvic pain will be told, sooner or later, that they do in fact have Irritable Bowel Syndrome (IBS).
Although, to a considerable degree, IBS is a diagnosis of exclusion (other gastrointestinal disorders must be ruled out), there are specific criteria for its diagnosis.
Women with chronic pelvic pain have symptoms consistent with IBS at least 50% of the time and some studies have suggested that 80% of women with chronic pelvic pain have IBS.
A number of names have been given to IBS over the years including spastic colitis or nervous colitis or mucus colitis. However, because there is, by definition, no inflammation in the colon, the use of the term “colitis” is inappropriate and should be relegated to the history books.
IBS is extremely common. It is estimated that 15% of all people have had it at one time in their life. It is the second most common reason for people to be absent from work and is probably the most common reason for people going to see a Gastroenterologist.
IBS is three times more common in women. It is five times more common in the Caucasian population and it is also higher in Jewish people than in non-Jews.
In 50% of cases, the symptoms begin before the age of 35 and 40% of people with IBS are between the ages of 35 and 50.
One startling statistic - 21% of women between the ages of 20 and 40 with IBS have undergone a hysterectomy - this is three to four times the national average!
IBS is officially classified as a function disorder because there are no structural or biochemical abnormalities associated with this disease. However, this does not mean it is a psychiatric disease even though stress will certainly worsen the symptoms and will often precipitate an attack.
As with other diseases discussed in this pamphlet such as IC, we now know that IBS is a disease of abnormal visceral pain perception. People with IBS feel more pain with intestinal distention than people who do not have the disease. If you were to put a balloon into the rectum of “normal” people and distend the balloon, they will feel a sense of pressure. Put that same balloon into someone with IBS and they will feel pain.
Another common problem associated with IBS is abnormal gas production. People with IBS produce more intestinal gas than people who do not.
Lactose intolerance can be demonstrated in approximately 40% of people who have IBS.
We now believe that the abnormalities of sensory perception in the intestinal tract produce local reflexes which affect motor function of the intestinal wall and, therefore, produce the symptoms of IBS.
Currently, the diagnosis of IBS is made according to the “Rome II” criteria. These criteria include the following:
There must be at least 12 weeks (which need not be consecutive) in the preceding 12 months of abdominal discomfort or pain that has at least two of the three following features:
1) The pain is relieved with defecation and/or
2) the onset of pain is associated with a change in the frequency of stool and/or
3) the onset is associated with a change in the form or appearance of the stool.
Other symptoms that support the diagnosis of IBS include:
1) Less than three bowel movements a week; 2) more than three bowel movements a day; 3) hard or lumpy stools; 4) loose or watery stools; 5) straining during a bowel movement; 6) rectal urgency; 7) feeling of incomplete bowel movements; 8) passing rectus mucus; 9) abdominal fullness, bloating, or swelling.
The characteristic symptoms of IBS include abdominal pain, bloating, belching, change in bowel habits, excessive gas, and painful bowel movements, as noted.
Several other important features in terms of diagnosis must also be noted. First, it is almost a matter of definition that the symptoms of IBS do not awaken someone at night from a sound sleep. If someone has gastrointestinal symptoms that awaken them at night, that is an organic disease until proven otherwise.
Secondly, the passage of blood is, again, almost an exclusionary criteria for IBS although hemorrhoids or a rectal fissure can produce bleeding. Occasionally, people with very very severe IBS may also have bleeding but it must be proven that there is no other organic disease present.
There are three main types of IBS patients - the diarrhea predominant type; the constipation predominant type; and the pain, gas, and bloating predominant type.
Treatment is targeted to the symptoms as there is no specific treatment for IBS itself. Although many of the treatments overlap, the treatments are directed at which group a given person will fall into. Furthermore, there is a great deal of overlap between the three groups.
For the constipation predominant type, increased fiber is important. Stool softeners also play a role and Zelnorm has often been shown to be effective.
Although tri-cyclic anti-depressants such as Elavil play a significant role in the treatment of chronic pelvic pain, in general, they tend to be more constipating than other types of similar mediations and, therefore, should be avoided, if possible, because it may aggravate the constipation.
For the diarrhea predominant type of IBS, again, fiber is important. Drugs that decrease intestinal motility such as Imodium are often of great benefit. In this situation, the tri-cyclic anti-depressants such as Elavil do play a significant role because of their constipating effect.
For the abdominal pain, gas, and bloating group, many of the anti-gas medications such as Beano or Gas-X may be of benefit. Mylicon is another effective medication.
Peppermint oil is often quite effective. It must be the enteric coated form. It’s an over-the counter medication. Most pharmacies do not keep it in stock but can order it for you if you wish. The trade name is Colpermin.
One thing that is important to keep in mind is the fact that IBS is a chronic illness and, therefore, the drugs that relieve symptoms must be taken on a regular basis. If you wait for symptoms to occur, you will not obtain significant relief.
The principal disorder that is often confused with IBS is intestinal endometriosis. Most women with intestinal endometriosis were told they have IBS at one time or another.
No one knows exactly how common intestinal endometriosis is. An article in the New England Journal of Medicine estimated that 5% of women have intestinal endometriosis. I don’t think this is an unrealistic number given the number of women who have endometriosis.
Unfortunately, the symptoms of intestinal endometriosis overlap considerably with the symptoms of IBS. These include loss of appetite, nausea, diarrhea, increased gas, bloating, crampy abdominal pain, painful bowel movements, and stabbing rectal pain.
Classically, the symptoms of intestinal endometriosis will wax and wane with the woman’s menstrual cycle. However, this is also true of any chronic illness such as IBS since hormone levels that change during the menstrual cycle affect pain perception and pain processing.
The vast majority of women with intestinal endometriosis will have been diagnosed with endometriosis in other locations and the treatment of the endometriosis directly with drugs such as Lupron will usually eliminate the intestinal symptoms. However, the hooker is that the Lupron lowers the estrogen level which will also alter pain perception and, therefore, the simple fact that the woman’s GI symptoms have been relieved by Lupron is not proof positive that she has intestinal endometriosis. The only symptom of intestinal endometriosis which is specific for the disease and nothing else is menstrually associated rectal bleeding.
Even though many women may have symptoms of intestinal endometriosis and many women at the time of laparoscopy will be noted to have surface implants of endometriosis on the bowel wall, significant intestinal involvement from endometriosis is fairly rare. I have seen several women over the years who actually had menstrually associated intestinal obstructions due to endometriosis and I have seen several women with large masses of endometriosis in their bowel wall that required surgical resection. However, these are the exceptions - not the rule.
PELVIC CONGESTION SYNDROME
The term “pelvic congestion syndrome” is a very old one. Many years ago, it was a very frequently used diagnosis. It was an over used diagnosis. It was an abused diagnosis and, because of this, it fell into disrepute.
Today, because of advances in diagnostic technology and a better understanding of what is going on, the term has been resurrected but now we know exactly what it means and we know how to deal with it.
As in many areas of the body, the veins in the pelvis can become quite large - varicose veins. When doing a laparoscopy for pelvic pain, it is not rare to see women who have large veins either alongside the uterus or next to the tubes and ovaries. I have believed for many years that these veins can cause pain but never had the evidence to substantiate my beliefs.
Not every woman who has large varicose veins in the pelvis will experience pain from them. Similarly, not everyone with varicose veins in their legs feels pain either.
Nonetheless, if a woman with pelvic pain is found to have large varicose veins, either at the time of laparoscopy, by ultrasound, or by MRI, it is now quite appropriate to label that woman as having a “pelvic congestion syndrome” and treatment directed at these large varicose veins is appropriate.
Just as varicose veins in the legs can be tied off, the same can be done for the varicose veins in the pelvis but it is obviously a much more difficult procedure. If the veins lie next to the tubes and ovaries, care must be taken to make sure that while the veins are ligated, the ovarian artery is not. Otherwise, there could be significant disruption in ovarian function and this could have serious consequences for a woman who desires future fertility.
Similarly, the same argument can be applied to ligating the uterine veins.
Given the nature of the problem and the anatomy involved, the surgery could be done laparoscopically but might require full open surgery. Fortunately, there are some hormonal therapies that are of benefit and these would be more appropriate for a woman who is trying to become pregnant. For the woman who has a significant pelvic congestion syndrome and whose childbearing is complete, hysterectomy would probably be the treatment of choice although embolization procedures have been used with some success.
In my experience, it is uncommon for a woman to have a pelvic congestion syndrome as the sole source of her pelvic pain. Therefore, as is usually the case with complex chronic pelvic pain syndromes, if we can find other, more easily treated, reasons for her pain, we might achieve a better degree of success.
OVARIAN REMNANT SYNDROME
One of the most painful conditions to be found in the female pelvis is the “ovarian remnant syndrome”. Fortunately, it is fairly uncommon. In all my years of practice, I have seen somewhere between 5 and 10 patients with this condition. However, as I will discuss, it must be strongly considered given the right clinical situation.
An ovarian remnant syndrome is created when a tiny piece of ovary is torn off and left behind when the ovary itself is surgically removed. This will almost always be seen in someone who has severe pelvic adhesive disease from either endometriosis, previous surgery, or a previous infection.
The term ovarian remnant syndrome should be reserved for this particular situation. You may also see the term “retained ovary syndrome”. This refers to an ovary that has been deliberately left in the pelvis when other surgical procedures have been undertaken such as a hysterectomy and that ovary continues to produce pain for whatever reason.
When a woman who has severe pelvic adhesive disease has one or both ovaries removed, tiny pieces are probably torn off and left behind far more frequently than is commonly appreciated. Fortunately, for both the woman and her physician, these tiny pieces of ovary die, shrivel up, and are absorbed by the body. However, in rare instances, that piece of ovary remains viable and continues to function.
Sometimes these pieces of ovary can be very small. Conversely, I have also seen them quite large. However, regardless of their size, they produce the most severe pelvic pain of any condition that I have ever seen.
Making the diagnosis of an ovarian remnant syndrome can sometimes be quite easy - sometimes very difficult. Very often, a vaginal ultrasound will show a piece of ovary in a woman who believes that ovary to have been previously removed.
Sometimes the ovary will be small enough that you can’t see it initially on ultrasound. However, by the use of hormone levels and various stimulation techniques such as Clomid, the ovary will enlarge sufficiently so that it can be seen.
Further complicating the diagnostic problem is the fact that the piece of ovary frequently ends up far away from its normal anatomical location. Regardless of where it is located, they produce severe pain and very often surgical removal is exceedingly difficult. Even when you think you have gotten it all, a piece can remain. I have seen patients who had previous surgery for an ovarian remnant who still had a remnant of the remnant.
As with anything in medicine, to make the right diagnosis you must first think of it. The classic set up for an ovarian remnant is a woman who will come in having had a hysterectomy with “removal” of her ovaries who continues to have severe pain and, when appropriate studies are done, she still has unmistakable evidence of functioning ovarian tissue. That woman has an ovarian remnant until proven otherwise. It then becomes necessary to find out where that remnant is located so that it can be surgically removed.
As with anything in medicine, an ounce of prevention can be worth a pound of cure. When removing the ovaries in a woman with severe pelvic adhesive disease, care must be taken to make sure that all ovarian tissue is either removed or at least in some way destroyed so that it will not come back to haunt you later on.
RETAINED OVARY SYNDROME
Another term you may come across in your reading is “retained ovary syndrome”. This is different from the “ovarian remnant syndrome” and it is important to make the distinction.
If a woman has endometriosis, if she is not interested in future childbearing, and she is either unwilling to consider additional medical therapies or has tried medical therapies and they have failed, then her only realistic option is a hysterectomy with removal of the tubes and ovaries. If a woman has endometriosis and undergoes a hysterectomy with removal of the tubes and ovaries, she has a 90% chance of achieving significant pain relief. Only 4% of women who have undergone such surgery for endometriosis will require additional surgeries for pain.
However, removing the ovaries in a young woman is a sword that cuts two ways (no pun intended). Many younger women (and even some older women) will notice a significant decrease in their libido if the ovaries are removed. To be sure this can be treated with hormones but often the results are not as satisfactory as would be the case if the woman still had at least one functioning ovary. As a result, some women will deliberately opt to leave one or both ovaries when undergoing a hysterectomy for endometriosis, knowing that this may result in recurrence of their endometriosis, persistence of their pelvic pain, and may leave them open to the need for future surgery.
The persistence of endometriosis symptoms, especially pain, in a woman who has undergone a hysterectomy with one or both ovaries left in place is called “the retained ovary syndrome”. If the symptoms are bad enough, the woman will probably have no choice but to have those ovaries surgically removed.
Myomata uteri (the common term is fibroids) are the most common benign tumor in the female pelvis. They are more common as you get older. The rule of “40” applies. This rule says that 40% of women at age 40 have fibroids. Sometimes they are extremely small and can be diagnosed only by ultrasound - sometimes they can be quite large.
I see many many patients with fibroids who have been told that the fibroids are the source of their pain. It is my firm belief, based upon many many years of dealing with these issues, that while occasionally women may have pain from fibroids, in the vast majority of instances, fibroids do not cause pain.
Fibroids may (and frequently do) cause various pelvic symptoms such as a feeling of heaviness or pressure. If a fibroid is sitting very near your bladder and is large enough, you may end up running to the bathroom all the time. On rare occasions, I have seen them large enough to produce constipation.
However, I will say again and I will say it over and over that my working rule is that fibroids do not cause pain. If a woman has fibroids and has pain, a search for other causes is absolutely mandatory.
MUSCULOSKELETAL PAIN and PELVIC FLOOR DYSFUNCTION
Pain arising from the pelvic muscles is one of the most common causes of chronic pelvic pain in both women and men. It is far more common in women for reasons that I will discuss in this section. It may be the primary cause or it may be secondary.
Pelvic floor dysfunction is the overall term that we now apply to pain that originates in the deep internal pelvic muscles and ligaments. Your pelvis is shaped like a bowl. There are muscles and ligaments on the outside of that bowl but there are also a number of muscles and ligaments on the inside. The internal muscles are relatively small. Every medical student learned their names in order to pass anatomy and then promptly forgot them. These muscles play a significant role in helping to stabilize the pelvis and also in the movement of your legs relative to the pelvis.
Pain may originate in these muscles because of problems associated with them that can arise from a number of different causes. One of the most common causes for injury to these muscles is pregnancy and childbirth. These muscles take a terrible pounding during labor and delivery.
Another common cause of internal muscle pain is the fact that women wear high heel shoes. This throws your pelvis into an abnormal tilt that Mother Nature never intended. Your muscles try to compensate for this and begin to hurt.
I believe that poor bowel and bladder habits may also account for pain originating in these muscles. Little boys can go to the bathroom anywhere. Little girls are frequently told by their mother to “hold it until you get home”. As a result, many girls acquire very poor bladder habits and pay a price for it later in life. The constant tension in the muscles which results from having to refrain from urination ultimately leads to pain. This can also affect older women who must hold their urine because their work schedules do not permit them to go to the bathroom as often as they should.
Pain arising in the deep pelvic muscles may also be secondary to pain from some other source in the pelvis such as Endometriosis. When you hurt, your body tries to compensate for that pain. One of the ways it does it is to minimize movement, particularly if you have discovered, either consciously or unconsciously, that motion worsens the pain. Your muscles begin to tense up. You do this unconsciously as your body tries to reduce the level of pain. As these muscles are subjected to chronic tension, they begin to ache in turn, producing a secondary pain that adds to whatever was causing the other problem you may have.
Other causes include problems related to your musculo-skeletal system that throw your pelvis into an abnormal position or alignment. Scoliosis, even mild degrees, will do this. So too will mild differences in leg length (a “short leg syndrome”).
Diagnosing pelvic floor dysfunction is at one time both easy and difficult. It is easy because on pelvic exam, tenderness in these muscles is easily detected.
To detect tenderness of the deep pelvic muscles, a rectal exam is necessary. The rectal wall itself is rarely the cause of pain. On rectal exam, pressure on these deep internal pelvic muscles results in the woman complaining of significant pain and the diagnosis is made.
If a woman has pelvic pain from any cause, movement of the vaginal wall on vaginal exam will often produce pain. If one presses on the deep internal pelvic muscles during a vaginal exam and the woman complains of pain, you cannot be certain where the source of the pain might be. It may be muscular but it may also be coming from the pelvic organs.
It has been my experience than many Gynecologists do not do rectal exams on younger women (and sometimes even older women). As a result, they are unable to detect the tenderness in the deep internal pelvic muscles and so are not able to accurately diagnose the source(s) of the pain.
Another reason for the difficulties related to diagnosis is the fact that these muscles are not easily accessible for other types of diagnostic testing such as an EMG.
By the time I see women with chronic pelvic pain, they usually have pain not only related to some pelvic disease such as Endometriosis, they frequently have secondary pelvic floor dysfunction as well. A successful outcome depends upon evaluating all of the possible causes of the woman’s pain and treating those problems separately and appropriately. Treating one while ignoring the other will not solve the woman’s problems.
The term “pelvic floor” is what is applied to the collection of muscles on the inside of your pelvis. Your pelvis is like a bowl and has muscles on both the outside and the inside. Everyone is familiar with the muscles on the outside. Most people do not stop to realize that there are sizable groups of muscles inside the pelvis as well.
The pelvic floor is comprised of several groups of muscles including the levator, the piriformis, the obturator, and the coccygeous muscles. In many chronic pain states, these muscles become extremely tense or may actually go into spasm. They may also develop trigger points.
The medical prefix that we use when talking about muscles of any kind is “myo”. The suffix “algia” refers to pain or discomfort. Therefore, the term myalgia simply refers to a painful muscle. If that muscle is painful because it is in spasm and it happens to be the muscles on the inside of your pelvis, we call it “Pelvic Floor Dysfunction” - abbreviated PFD. Other terms you may see include “Pelvic Floor Tension Myalgia” or “Pelvic Myofascial Pain Syndrome”.
Women develop PFD for a variety of reasons - sometimes it is a primary problem, sometimes it is secondary to other causes of pain as I described previously as a visceral- somatic reflex.
One of the most common reasons for women to develop PFD is childbirth. The pelvic floor takes a terrible beating during labor and delivery. 20 to 30% of women may actually develop tears in the muscles. Sometimes the muscles are actually pulled away from the bones in the pelvis. The surrounding muscles have to work harder in order to maintain some semblance of normal function. These other muscles then begin to hurt and they can hurt quite severely.
Another reason women develop PFD more frequently is the fact that they wear high heel shoes. High heel shoes throw your pelvis into an unnatural tilt and these muscles have to work harder in order to maintain balance.
Poor posture and other orthopedic abnormalities such as a short leg syndrome (not a rare condition) also result in PFD.
Lastly, as I indicated, if a woman is in pain from some other source, the pelvic muscles go into spasm in an attempt to minimize the pain. The muscles themselves then become a source of pain - another pain generator.
Having a cesarean section does not necessarily automatically protect the pelvic floor but the likelihood of a severe injury is somewhat less.
Another manifestation of PFD is Coccygodynia. The anatomical name for your tail bone is the coccyx. Many people who fall on their rear ends often have pain and think they broke their tail bone. In fact, it is spasm or tears in the Coccygeous muscle and other pelvic floor muscles which are attached to the tail bone that is the true source of the pain.
Treatment of pelvic floor dysfunction involves physical therapy and exercises specifically targeted to those internal muscles along with relaxation techniques and other modalities. Most women with this type of problem will notice significant relief within a relatively short period of time.
LOW BACK PAIN
Although, technically speaking, low back syndromes are not really a part of chronic pelvic pain, they do have a profound impact on this problem.
Low back pain is a very common problem in this country. It is the price we pay for getting up off of four legs and walking around on two. People who suffer from low back syndromes frequently miss significant amounts of time from work.
In women with chronic pelvic pain, they frequently have low back issues such as herniated disks, collapsed disks, arthritis of the spine, spinal stenosis, and related issues. In my experience, osteoporotic related spinal fractures are a much lesser issue.
It almost goes without saying that if you have a significant problem with your lower back, you will not walk properly. As a result, this puts a significant strain on your pelvic floor and, if the problem goes on long enough, it becomes another pain generator. Pain originating in the back can be felt in the pelvis — sometimes worse than the back pain itself.
SHORT LEG SYNDROME
Another not uncommon problem is the so-called “short leg syndrome”. None of these are completely symmetrical. If you look in the mirror, one eye may be slightly different than the other; one ear is often shaped different from the other; one side of your nose may be slightly different that the other; most women have one breast that is slightly different than the other, etc.
One common problem is the fact that a leg may be shorter than the other. This induces a permanent pelvic tilt. Again, this creates significant strain on the pelvic floor and becomes another pain generator. Measuring leg length is fairly easy although it is not as accurate as people sometimes believe. If, however, it can be definitively established that you do in fact have a short leg, putting a lift in one shoe can dramatically relieve at least some of your pain.
PELVIC FLOOR EXERCISE INSTRUCTIONS
This part of the discussion deals with various pelvic exercises that you may have heard of and which may do more harm than good. Pain arising from these muscles is a common source of chronic pelvic pain in women. The term that is currently being applied to such a problem is “Pelvic Floor Tension Myalgia” although you may see it referred to as “Pelvic Floor Dysfunction”.
Pelvic floor dysfunction, as I have already described elsewhere, is the result of numerous causes including childbirth. Anything that distorts your posture in any way can also create or contribute to this problem. High heeled shoes and especially platform shoes will throw your pelvis into an abnormal tilt and put undue strain on the muscles and ligaments.
Another common cause for pain arising in these muscles is seen in women who have chronic pelvic pain from other causes such as Endometriosis. In an attempt to compensate for this and to reduce the severity of the pain, your body will unconsciously tense these muscles. Eventually, the resulting chronic muscle tension creates pain in a manner similar to that of a headache which results from chronic tension in the muscles at the back of your neck, upper chest and shoulders.
Think of your pelvis as a bowl. There are muscles on the outside of the bowl and these are the large muscles that you can feel and help to move your legs.
There are also numerous smaller muscles on the inside of the bowl. These muscles help to stabilize your pelvis and aid in the movement of your legs and lower back.
Because of the location of these muscles, it is often difficult to evaluate them; it is difficult to test them; it is difficult to examine them; and it is difficult to treat problems arising in these muscles. I suspect PFD in any woman with chronic pelvic pain.
Making a diagnosis is usually fairly easy - significant tenderness in these muscles when they are palpated on rectal exam makes the diagnosis. It is essential that they be “poked” on rectal exam. Simply pressing on these muscles on vaginal exam can produce a false diagnosis. Pressing on these muscles through the vaginal wall also stretches other pelvic tissues and if there is pain arising in these other areas from problems such as Endometriosis or Interstitial Cystitis, it is easy to erroneously conclude that there is deep pelvic muscle tenderness as well.
Not every woman with chronic pelvic pain has pelvic floor dysfunction but a substantial percentage do. In order to help treat the pain syndrome completely, it is necessary to address the muscles as well as the other problems that may be present such as Endometriosis.
The basic principle to keep in mind is that your pelvic muscles do not need strengthening – they are already strong – they are tense and often in spasm. Treatment really consists of learning how to relax and retrain the muscles.
The first set of exercises that were ever devised for pelvic floor dysfunction (although they didn’t use the term at that time) are Kegel’s exercises. Kegel’s exercises were originally devised to improve bladder control - to correct urinary incontinence. They are based on the theory that by strengthening the internal pelvic muscles a woman can improve bladder control and avoid the embarrassment of wetting herself when she coughs or sneezes.
Unfortunately, there is no physiologic basis for these exercises. There is no sphincter muscle that controls your bladder and keeps you continent the way there is an anal sphincter that controls your rectum. Just as an aside, no one really understands exactly what it is that keeps a woman continent. It is important to understand that there are two types of muscles in your body - voluntary and involuntary. Your voluntary muscles are the ones that are under your conscious control. These are the large muscles that move your arms and legs, etc. You can strengthen these muscles as Kegel’s exercises do. However, strengthening the muscles will often make your bladder symptoms worse.
Your involuntary muscles are the ones found in your intestinal tract, bladder, etc. These are not under voluntary control and there are no exercises that will strengthen them.
It is true that in order for a woman to urinate or have a bowel movement, she must relax the muscles in her pelvic floor around the vaginal opening and in areas in close proximity to the vaginal opening. Anything that inhibits a woman’s ability to relax these muscles will interfere with her ability to urinate. Pain is probably the most common cause and it is not rare for women who have recently had children to be unable to urinate for a while since the pain from the episiotomy interferes with the ability to relax these muscles. The same is true for women who have these problems if they undergo surgery and have a catheter inserted.
There are other techniques that are also available to help reduce the level of pain arising from these muscles. Such techniques include biofeedback and relaxation techniques and through the pelvic pain center that I have established referral to physical therapists and other physicians who are knowledgeable in these techniques can also help considerably. It is important that this therapy be done by people who are knowledgeable about PFD. Most physical therapists are not trained to treat these problems.
VULVODYNIA AND VULVAR VESTIBULITIS
Another condition that has caused women to suffer greatly over the years and which until relatively recently was very poorly understood, are the conditions known as vulvodynia and vulvar vestibulitis. Because these conditions were so poorly understood, women underwent numerous therapies - most of which were totally ineffective. We now recognize that they are in fact simply another manifestation of a complex regional pain syndrome, specifically chronic pelvic pain.
The vulva is quite simply that part of your anatomy between your legs. The lateral margins are the upper inner thigh. In front, it is the mons - the small mound of tissue that is covered by pubic hair just above the clitoris. In the back, it is the anus. The inner border is the hymen.
Vulvodynia is the overall term applied to pain in the vulva often described as a burning pain. It is generalized in most instances and afflicted women can be extremely uncomfortable.
Vulvar vestibulitis is a more localized version of vulvodynia. The vestibule is that portion of your anatomy that surrounds the vaginal opening. The lateral borders are the inner surfaces of the labia minora (the smaller or inner vaginal lips). The front border is the clitoris. The posterior border is the small “V” area where the labia come together just above the anus. This is called the posterior fourchette.
Vulvodynia is the term that refers to the problem if it affects the entire vulva. Vulvar vestibulitis is a subset referring to the problem related to the vestibule alone. Some patients will start out with generalized vulvodynia and then switch over to a more localized form and vice versa and individual patients can jump back and forth from one condition to the other.
The vestibule is lined by a mucous membrane - it is smooth skin without hair.
The principal symptoms of vulvar vestibulitis are burning and painful intercourse. In many women, the pain is so severe that intercourse is virtually impossible.
Again, women will usually complain of very severe burning around the vaginal opening, especially when intercourse is attempted or when tampons are used. On physical examination, the diagnosis is made by gently touching the areas around the vaginal opening with a Q-tip. A normal woman will feel only the pressure of the Q-tip. A woman with vulvar vestibulitis will experience severe pain. It is another manifestation of allodynia.
Before we began to understand the true nature of vulvar vestibulitis, numerous studies were carried out looking for causes such as viral infections, etc. Nothing was ever found. In fact, that is one of the criteria — all other possible causes must be eliminated.
We now understand that vulvar vestibulitis is in fact another manifestation of a complex regional pain syndrome. Women with IC very frequently have vulvar vestibulitis - when the bladder becomes super sensitized, the nerves to the vaginal area also become “up regulated”. Women with PFD are also quite prone to vulvar pain. By recognizing the true nature of the disease, we are now able to offer women a much more satisfactory therapy, one that has a much better chance of working. In the past, numerous remedies were tried up to and including surgical removal of the area. Understandably, most of them did not work. The surgery did work - most likely, because it simply cut the nerves and not because it was doing anything to address the underlying cause. Treating the underlying pelvic pain syndrome is the best treatment for vulvodynia and vulvar vestibulitis.
The National Vulvodynia Association’s web site is an excellent resource with information for people who have vulvodynia.
Hernias are another common cause of pelvic pain. Some types of hernias are familiar to everyone - other hernias are very uncommon or people have not heard of them.
The most common hernia in women is an inguinal hernia in the groin. This hernia is also the most common hernia in men. Men will have a bulge at the site of the hernia. However, a bulge in women is very uncommon. They will have pain instead.
Another type of hernia that can cause pelvic pain is a femoral hernia. It is very close in location to the inguinal hernia. Femoral hernias are more common in women although they are relatively uncommon overall.
Women can also have a number of internal hernias that may be causing their pain. These hernias can sometimes be suspected by symptoms and pelvic examination but a laparoscopy is often necessary to make the definitive diagnosis and, in many instances, these hernias can be treated quite effectively by laparoscopy.
It is for this reason that even if I know or strongly suspect that a woman has a reason for her pelvic pain such as endometriosis, that I will still recommend a laparoscopy. I can see an inguinal hernia that I may have only suspected was present by laparoscopy. Some of the deep internal hernias - called either sciatic hernias or obturator hernias - can only be diagnosed definitively by laparoscopy. In very rare instances, these hernias will be large enough to produce an actual bulge or lump but, in the majority of instances, they will only make their presence known by the pain they produce.
Umbilical hernias (in the navel) are fairly common but they rarely produce any significant degree of pain.
Incisional hernias are also causes of pelvic and abdominal pain and they are more common than most people realize. During any type of abdominal surgery, the thick fibrous tissue that really holds you together called fascia is cut to allow a surgeon to get inside the abdomen. At the end of the surgery, the fascia is sewn together.
If it does not heal properly, a small opening will occur like a seam in your pants that begins to separate.
A not uncommon and often overlooked cause of pelvic pain, particularly in women, is a small hernia in the abdominal wall named after the anatomist - Spigel - who first described it several hundred years ago.
These hernias are quite small - usually too small to be actually felt unless the woman is very thin. They are found at (where else) Spigel’s point - a point about two inches below the navel and two inches to either the right or left. Although these hernias can sometimes be seen up and down the abdominal wall along Spigel’s line (a line running vertically about two inches laterally to the navel), they are most commonly found in the lower portion of the abdomen as described.
Making the diagnosis of a spigelian hernia is usually quite simple. The woman complains of pain in the lower abdomen. Physical examination reveals tenderness - often quite severe - that is very highly localized to Spigel’s point. Examining an area even an inch away from Spigel’s point reveals no tenderness at all.
These hernias occur where two sheets of heavy tendon like tissue cross each other in the abdominal wall, thus creating an inherent weak point. Anything that creates significant distention of the abdominal wall predisposes to the formation of these hernias. This is why they occur more frequently in women. Being pregnant and carrying a full-term pregnancy creates the abdominal wall distention necessary to cause one of these hernias.
Laparoscopic surgery probably also predisposes to one of these types of hernias. Since women tend to undergo more laparoscopic procedures than men, these hernias are again more likely to occur in women although, according to what I have been told, they are not that rare in men either.
Making the diagnosis is usually quite easy. As I have said, the woman complains of pain and examination reveals a highly localized tenderness in the abdominal wall. Further confirmation of the hernia can be obtained by injecting the area with a local anesthetic solution. If the pain disappears, the hernia is probably present.
Since these hernias are too small to be actually felt, the diagnosis is based on the physical findings that I have just described.
If the hernia is present and it is causing sufficient pain to justify therapy, the treatment is relatively simple. It does require a small incision in the lower abdominal wall. This hernia repair can usually be done as an outpatient under local anesthesia and recuperation is usually fairly rapid.
Many times a woman will have other reasons that would justify the performance of a laparoscopy at the same time the hernia is repaired so that both can be done together.
Trigger points are another common cause of chronic pelvic pain when they occur in the lower abdomen or pelvis or lower back. It is important, however, to understand that trigger points can occur almost anywhere in the body but they are most common in the neck, shoulders, chest, abdomen and pelvis.
Trigger points are a very curious phenomenon. They represent localized areas of muscle spasm that generate intense pain. No one is quite sure what causes them. However, I see them quite often in women with chronic pelvic pain. Continued muscle tension in the muscles in the lower abdominal wall as a way of trying to minimize other sources of pelvic pain could certainly be one contributing factor.
Diagnosing a trigger point is quite easy. The woman will tell me that she has severe pain localized to a very tiny area. Pressure on this area will usually cause pain to radiate, especially into the lower abdomen or legs. Sometimes, especially if the woman is thin, you can actually feel a small area of spasm in the muscle.
Trigger points can also occur in the pelvic muscles. When they do, they “radiate” their pain to the lower abdomen or groin. In fact, tenderness over a presumed trigger point without radiation often means the tender area is not a true trigger point.
Treatment of a trigger point is also simple. You simply inject the area with several cc’s of a local anesthetic. If the pain disappears, you have made the diagnosis and you have also taken the first step toward treating the problem. Sometimes, in order to get rid of the trigger points completely, repeated injections of the area are necessary over a two to three month period. However, with repeated injections, in many instances, the trigger point will disappear.
Unfortunately, in many women with chronic pelvic pain, they have multiple trigger points and, therefore, a careful search must be made so that each one can be identified and treated.
PSYCHOLOGICAL & NEUROLOGIC FACTORS IN CHRONIC PELVIC PAIN
The interplay between mind and body has interested and fascinated physicians for centuries. Obviously, except for purposes of discussion, you cannot separate them. Nonetheless, even in the presence of physical disease, psychological factors play a role in almost every human illness.
This type of interplay naturally gives rise to the belief that some symptoms are purely psychological in origin. We call such diseases “psychosomatic”. What people must realize is that psychosomatic symptoms are every bit as real and every bit as severe and every bit as debilitating as a true physical illness.
We must also separate to the degree that we can the psychological as opposed to the neurological aspects of central nervous system functioning. By neurological, we mean the actual physical functioning of the brain and the remainder of the nervous system. Ultimately, of course, even psychological problems must be the result of some abnormal function of the brain tissue. However, it is convenient and probably important to try to separate the two.
The way your brain processes pain is still one of the unresolved problems that bears heavily on this entire issue. Obviously, psychological factors influence the way we perceive and react to pain. If you are at a party and having a good time, you may not notice a large bruise until you return home. On the other hand, people under considerable stress may react to even minor injuries or illnesses far more than one might expect.
Everyone has probably seen examples of people under hypnosis who can tolerate a nail be driven through their hand without visible reaction to the pain. Everyday experience has shown us that there are some people who are able to tolerate pain far better than others.
We are also now beginning to understand that certain “diseases” may in fact be the result of the body’s inability to process pain signals properly. Instead of a minor ache or pain being perceived for what it is, the pain pathways in your nervous system magnify and exaggerate the pain signal so that your brain then perceives it as being far worse than perhaps the injury or illness truly is.
There is evidence beginning to emerge that fibromyalgia and perhaps chronic fatigue syndrome may be illnesses that involve more an abnormal processing of brain signals than a severe underlying disease. To be sure, people with fibromyalgia or chronic fatigue syndrome often do suffer greatly. It very well may be that it is more a problem of processing than the underlying abnormality.
There is also evidence beginning to emerge that fibromyalgia, chronic fatigue syndrome, and depression may all be part of the same spectrum of diseases and that what label is put on someone is more a function of who initially sees that person rather than any substantive difference in the underlying disease process. When you look at these three diseases, they share many common features and symptoms.
If in fact it turns out that fibromyalgia and chronic fatigue syndrome really involve abnormal processing of what might otherwise be considered “normal” stimuli (possibly created or worsened by underlying depression), it does not fully address the issue as to why these diseases occur far more frequently in women than they do in men. For years, the National Institutes of Health deliberately ignored sexual and racial differences when studying various illnesses and drugs. Almost every drug study was done on white men. We now know that there are in fact significant differences that affect the way we metabolize various drugs but the information is just coming out.
Part of the reason the FDA and the NIH did their studies on men only is that they were deathly afraid of giving a drug to a woman who might have been pregnant at the time. Although the reasons for this fear are quite understandable, rather than take the extra steps necessary to ensure that such an event did not occur, women were simply excluded from the studies.
However, there is another type of disease that we know does occur far more frequently in women and that is the autoimmune diseases such as rheumatoid arthritis, Lupus, etc. Many autoimmune diseases, particularly those that fall into the “collagen vascular” type of autoimmune disease, show a significant predilection for women. The reasons for this are becoming apparent but is beyond the scope of this discussion about pain. Nonetheless, even eliminating the fact that men almost never get Endometriosis (there are very rare exceptions when they do) men still do not develop chronic pelvic pain the way women do. This certainly does raise the possibility that women’s nervous systems are inherently different than men’s and that they do in fact process pain signals differently.
This may also be the reason why women with very small amounts of Endometriosis often suffer much more severe pain than women with much more severe disease. When studies are done performing what we call a “mini laparoscopy” under local anesthesia for the purpose of pelvic pain mapping, there are obviously some women with significantly exaggerated responses to minor stimuli. It definitely appears that in these instances, these women’s nervous system is functioning at a “higher level” and that even minor degrees of discomfort are significantly magnified.
Another major psychological issue that always comes up for discussion when the subject of chronic pelvic pain is mentioned is sexual abuse. Several studies have been done which claim that 25% to 40% of women with chronic pelvic pain were sexually abused as children or suffered some other similar problem.
Every new patient in our office receives a questionnaire to fill out before they come for their first visit. There is a specific question asking about childhood sexual abuse, rape, etc. In our experience, the number of women who will initially admit to being abused is quite small - less than 5%. The numbers in our practice don’t even begin to approach the 25% level that is often quoted. One factor that may be skewing the data is the fact that this is a very difficult area for women to discuss, even when allowed to answer the question on paper rather than under the psychological pressure of a face to face interview.
Women who have been my patient for many years may finally admit to having been abused but it took them a long time to do so.
Perhaps childhood sexual abuse does play a role in chronic pelvic pain but it is our experience that the frequency of such abuse is not anywhere nearly as great as some studies would suggest.
There is one psychological problem that must be mentioned in any discussion of chronic pain, pelvic or otherwise. This problem is depression. It is estimated that 10% to 15% of all people are significantly depressed at any one given time. It is an extremely common problem in this country - one that is often misdiagnosed and under diagnosed.
There are a number of problems that arise when discussing depression in relationship to chronic pelvic pain. First, as I have mentioned, any underlying psychological stress or psychiatric illness such as depression will alter and magnify our responses to pain.
Second, anyone who is in pain is going to become depressed sooner or later. You then get locked into a viscous cycle where the pain magnifies the depression and the depression magnifies the pain.
Further complicating the issue is the fact that we have known for many years that somatization is common in people with depression. Somatization is a psychiatric term which simply means that you have numerous bodily complaints as a symptom of the depression. These complaints tend to be vague and non-specific such as generalized muscle aches and pains, fatigue, headaches, sleep disturbances, etc. These are also some of the symptoms that are associated with fibromyalgia and chronic fatigue syndrome.
We have known for many years that anti-depressant medications are often very helpful in the treatment of chronic pain - pelvic or otherwise. Is this simply because such people are depressed as a result of their pain and the anti-depressant, by lessening the depression, helps alleviate some of their symptoms? While this may be true, there is also good evidence that anti-depressant medications alter the way your nervous system processes pain messages to the brain.
The problem when discussing psychological issues in relationship to chronic pain, particularly chronic pelvic pain, is that many people automatically assume that the pain is being labeled as psychosomatic and that with the implication that the pain is not real and that women who suffer from chronic pelvic pain are basically nuts.
I can only reaffirm what I have said many times before - that pelvic pain is real and that it is my opinion that very little pelvic pain is purely psychological in origin. Women feel as if they are nuts because far too often they have been made to feel that that is the case.
There is no doubt that raising the issue of psychological problems is in and of itself quite stressful to some people. Many people do not like to be told they are depressed or have some other psychological problem. This is the main reason for many of the pseudo-diseases that pop up from time to time. Every year, there seems to be a new fad disease. Once it was hypoglycemia; another year it is chronic Epstein-Barr virus syndrome; later we were bombarded with books talking about chronic yeast syndrome.
These “diseases” share many things in common. First and most importantly, they do not exist. People may become hypoglycemic for various reasons but there is no disease hypoglycemia. Chronic Epstein-Barr virus syndrome is rare; there is no such thing as chronic yeast syndrome.
Another thing they share in common is symptoms, chiefly fatigue. When you read the covers of these books and look at the list of symptoms that are supposed to indicate you have one of these non-diseases, they are all the same. What they really are listing are symptoms of depression. Many people, when told they are depressed, look for another physician to tell them something else. They search until they find someone who will label them with a medical disease. It is much less emotionally stressful to think you have a physical disease than simple depression. You can talk about a disease more easily than admit you are depressed. Furthermore, you have to invest so much time and energy doing all the things you are supposed to do to treat this non-disease that you don’t have time to think about your other problems.
Nonetheless, psychological issues do play an important part of the overall assessment and treatment of chronic pain — pelvic or otherwise. You simply cannot separate the mind from the body but such discussions no way imply that the pain is psychosomatic in origin.
PSYCHOGENIC PELVIC PAIN
To expand on the previous section, newer information requires some modification of our thoughts on psychogenic pain. We have known for years that emotional stress will worsen pre-existing pain. Almost everyone’s personal experience is testimony to that fact. If you were at a party and having a good time and then stubbed your toe or banged your shin, you may not even notice it until you got home. On the other hand, if you are upset about something, even a minor bump can cause significant distress.
Depression and pain go hand in hand. The same areas of the brain affected by depression are those involved in pain perception and modulation.
That being said, until relatively recently, I would have told you that I did not believe there was anything such as purely psychogenic chronic pain. Newer information has now made it quite apparent that the same mechanisms that set the stage for stress to worsen pre-existing pain also set in motion events that, by themselves, may create pain.
When people think of pain in their head, they think that it’s imaginary but in fact people do have real pain in their head caused by stress - we call it a headache. Even though this pain may be brought on by stress, it is no less real than the pain that you would experience if you stubbed your toe.
Once again, an inflammatory response appears to be at the root of this issue. Studies have now clearly shown that chronic psychological stress causes the release of various hormones and other chemicals as I have already discussed which creates, at least at the biochemical level, an inflammatory response which is indistinguishable from the inflammation produced by injury, a viral infection, or a bacterial infection, etc. We call this “neurogenic inflammation”. It has been theorized that long-term chronic stress may be one of the underlying causes of cardiovascular disease, asthma, and related conditions. It is also believed that, at least to a certain degree, neurogenic inflammation plays a significant role in other chronic pain conditions including interstitial cystitis, irritable bowel syndrome, endometriosis, etc. This does not automatically mean that these conditions are purely psychogenic — they most certainly are not. However, as with any pain syndrome, stress will worsen the symptoms.
One of the most telling features of this syndrome involves interstitial cystitis which is discussed elsewhere in this pamphlet. We know that in the wall of the bladder, as well as elsewhere in the body, mast cells are served by a single nerve fiber and, when stimulated, release histamine. The mast cells store histamine in small packets called “granules”. At one time, the concentration of mast cells in the wall of the bladder as determined by a biopsy was one of the criteria for interstitial cystitis.
The nerves associated with the mast cells are called the “C fibers”. These are very small unmyelinated nerves that we have known for a long time are associated with pain. When fired, the C fibers release “substance P” which we now know to be a very important neurotransmitter, particularly in the spinal cord. Substance P causes the mast cells to “degranulate” and release histamine. In addition, many other inflammatory chemicals are released from the mast cells and sets in motion an inflammatory response which, if near the skin, will produce the typical physical signs of inflammation with which most people are familiar including redness, etc.
Much of this information also helps us understand why many of these chronic pain syndromes appear to be much more common in women. This can be better understood if you realize that mast cells found in the bladder wall of women with IC contain estrogen receptors which means that they are programmed to respond to estrogen. Estrogen increases the production of a chemical substance called Nerve Growth Factor which leads to an increased nerve supply in the affected organs. Drugs that reduce estrogen such as Lupron may, therefore, play a role by decreasing this growth factor. This interplay of hormones undoubtedly is at least part of the explanation why, as we have known for many years, women’s various symptoms will vary with their menstrual cycle, regardless of the underlying cause of the problem.
Neurogenic inflammation is also being implicated as one of the reasons for the pain that is associated with endometriosis. Both my personal experience and that of everyone else treating this crazy disease knows that we can find endometriosis in women who have absolutely no pain whatsoever and yet other women can have a very small amount of endometriosis with severe pain. The severity of the neurogenic inflammation (which we cannot unfortunately measure directly) could easily explain this discrepancy.
The treatment of women with chronic pelvic pain is as varied as the number of women who suffer from this problem. Chronic pain has been described as a form of torture and I fully agree with this description. Every attempt must be made to restore the suffering person to as close to a normal life as is humanly possible.
The basic underlying principle of all medicine is to establish the proper diagnosis. All treatment flows from that. Therefore, it is critically important that we identify every “pain generator”. Each and every pain generator must be treated to the degree that it can be.
One thing is essential to keep in mind always. Those of us who treat chronic pain patients are extremely gratified (and sometimes surprised) when we can make someone pain free. Although that is always our goal, we realistically understand that is not usually attainable. Although pain - free is what we shoot for, pain - less is a far more realistic goal. On a scale of 1 to 10, if someone comes to me whose average pain is an 8 or 9 or 10 and I can get them down to a 4 or 5, then I know I have significantly improved the quality of their life. Returning people to normal function is the thing that we always strive for.
It is also important to keep mind that the longer a person has been in pain, the less successful our therapies are going to be, largely because of the neuropathic pain that has inevitably developed.
There are six principal systems in the pelvis that account for virtually all pain. Again, it is important to always remember that the vast majority of women with chronic pelvic pain have more than one source of their pain - they have multiple pain generators.
When people think of chronic pelvic pain, they automatically think of reproductive tract pain. This would involve pain coming from the uterus, tubes or ovaries and involve such diseases or conditions such as endometriosis, adenomyosis, chronic pelvic inflammatory disease, pelvic adhesive disease from other causes, ovarian cysts, etc. As I have already pointed out, in actuality, only 20% of women with chronic pelvic pain have reproductive disease as the primary source of their pain.
Non-reproductive tract pelvic disease include things such as internal hernias.
Another very common cause of chronic pelvic pain is urinary tract disease, most notably interstitial cystitis, about which there is a section earlier in this pamphlet.
The fourth main cause of chronic pelvic pain is gastrointestinal disease - irritable bowel syndrome.
Another very common cause of pelvic pain is pain arising in the abdominal wall. Many women with chronic pelvic pain will have trigger points. If they have had previous surgery, incisional hernias are common.
Women who have had previous abdominal surgery have two main types of incisions - a vertical or up-and-down incision running from just beneath the navel to the pubic hairline. Estimates are that hernias in this type of incision are somewhere between 10 and 20%.
The other main type of incision runs across the lower abdomen just above the pubic hairline. In case you do a lot of reading, this is called a Pfannenstiel incision. At one time, we believed that hernias in Pfannenstiel incisions were very uncommon. We now recognize that probably 10% of all people with such an incision will develop a hernia.
These hernias can be extremely small so that you can’t fell them but you can suspect their presence by your history and physical examination.
Groin hernias occur much more frequently in women than is commonly believed. Two main types of hernias are present in women. Inguinal hernias are the most common and femoral hernias (although fairly uncommon) are seen more frequently in women than they are in men. Men with a hernia have a bulge. Women frequently do not. Again, the diagnosis is suspected and/or made by a good history and physical exam.
Lastly, pain arising from the pelvic muscles, nerves and ligaments constitutes the last major category. This goes by many names. I call it PFD - Pelvic Floor Dysfunction. You may also see it referred to as a myofascial pain syndrome, pelvic floor tension myalgia, etc. They are all synonyms for the same problem. Most women with chronic pelvic pain have at least some degree of PFD.
Sometimes these various problems are the result of a primary problem such as endometriosis. In other instances, they are secondary to pain arising in other sources. PFD is perhaps the most common example.
Women with other musculoskeletal abnormalities such as a short leg syndrome, herniated disks, scoliosis, etc. may also develop secondary pelvic PFD as a consequence.
To establish the identity of the various pain generators, one starts out as you would in any medical problem - a good history, a good physical examination, and then additional studies as seem indicated.
An MRI of the pelvis is often very helpful to determine whether a woman has adenomyosis, muscle tears, etc. Occasionally, a hernia will even show up.
One very important diagnostic tool in the evaluation of the woman with chronic pelvic pain is a laparoscopy. Laparoscopy is a sword that cuts both ways (pun intended). It certainly allows us to identify sources of pain that would otherwise be missed and which cannot be identified in any other fashion. This would include deep internal pelvic hernias, pelvic adhesions, etc.
The problem with laparoscopy is that too many physicians get itchy fingers. If they put a laparoscope in and see something they feel compelled to treat it. This does not always help and may make things worse. As an example, we know that cutting adhesions will reduce pain temporarily. Unfortunately, the adhesions are going to come back and may be worse.
We know that removing endometriosis or destroying endometriosis will sometimes result in significant pain relief. However, if nothing further is done, eventually the endometriosis and/or its symptoms will almost always recur.
Nonetheless, I do feel that laparoscopy is important for its diagnostic capabilities even if it does not always result in the relief of pain that many people have been taught to believe is the case.
Once the pain generators have been identified, then they all need to be treated to the greatest degree possible. Endometriosis needs to be suppressed hormonally. Ultimately, many women will end up with a hysterectomy and removal of the tubes and ovaries as the only way to deal with their endometriosis pain.
Interstitial cystitis needs to be treated using the various medications that we now know are effective.
IBS needs to be treated with dietary modification, stress management, and again, appropriate medication depending upon the nature of the symptoms.
We now have good therapeutic tools to treat PFD. Physical therapy with biofeedback, muscle relaxants, etc. often significantly reduces the amount of pain coming from the pelvic muscles.
It is an unfortunate fact that the majority of people with chronic pelvic pain end up on multiple medications. I know that people rebel against this. Many people do not like taking drugs. However, without these medications, our ability to deal with your pain and help you achieve relief is significantly limited.
Another problem is the fact that even though many people are willing to take these medications, they cannot tolerate the side effects. It becomes a balancing act trying to achieve the greatest relief possible with the fewest side effects. Sometimes it is easy - sometimes it can be very difficult.
I point these things out to you not to make you depressed but to give you realistic expectations about what we are doing and what we hope to accomplish.
DRUG THERAPY OF CHRONIC PAIN
The treatment of chronic pelvic pain involves, first, identifying all the pain generators and then, secondly, devising a mode of therapy that addresses each and every pain generator. The goal of the therapy is to control whatever disease may be present and also to alleviate the pain to the degree that it is possible.
To accomplish these goals, first, a woman will have gone through an extensive work-up which will include a complete history, physical examination, ultrasound, MRI, and laparoscopy. This is usually enough to identify the pain generators.
Treatment of chronic pain almost always involves medication - usually multiple drugs are necessary. Other therapies that may be tailored to specific problems include physical therapy for those who suffer from PFD and dietary modification for those who suffer from IC.
Many patients with chronic pelvic pain resent deeply the fact that they have to take the medications that they do, particularly because they are taking so many of them. This is a very normal and human reaction. However, I cannot emphasize strongly enough how important these medications are in the treatment of chronic pelvic pain. If we are not successful in reducing the level of your pain to the greatest degree that we can, not only will you continue to suffer, the pain will probably worsen.
One of the main therapies in dealing with chronic pain are those drugs specifically designed to relieve pain. For mild pain, aspirin, Tylenol, or various NSAID’s such as Advil, Motrin, etc. will work. However, for those patients with significant chronic pelvic pain syndromes, the severity of the pain is usually too great to allow these over-the-counter drugs to be of any real benefit. As a result, sooner or later, we have to resort to narcotics.
Many people are afraid to take narcotics based upon a great deal of myth and misinformation. Understand that narcotics are being given to you to control your pain to allow you to either remain or become functional. In other words, the goal of therapy is to allow you to lead as normal a life as you possibly can, doing the things that normal people do. This means going to work, doing whatever around the house needs to be done, enjoying intercourse without pain, being able to go to the bathroom normally, etc. In other words, it means no longer being a slave to your pain.
It is important to understand that the majority of people who take narcotics for control of chronic pain do not become addicted, contrary to popular belief. Occasionally, I will see someone in my practice who I realize is addicted and these people need to be dealt with specifically to help them with their addiction. Understand that addiction pertains to those people who seek out these drugs for the psychological benefit they obtain from it. The vast majority of my patients who are on narcotics for control of their pain resent having to take these drugs. They wish they could be off them. They are not in the least addicted. This is not just my experience, this is the experience of everyone who deals with chronic pain.
This is not to say that you do not become tolerant of these drugs. This is inherent in the nature of narcotics. Some people can stay on the same dose for years; other people, as time goes by, do require larger doses of narcotics because smaller doses will no longer control your pain satisfactorily. This does not mean you have become addicted. There is undoubtedly an element of physical dependence but it is not addiction. It is important to keep in mind that many people who suffer chronic pain require and can tolerate substantial doses of narcotics without any apparent adverse effect. I have several patients on rather large doses. They lead functional, productive lives and could not live the lives they do were it not for the drugs they are taking.
Obviously, we start out with the less potent drugs at lower doses but I do not hesitate to increase them as necessary, especially if the lower doses do not control your pain. It makes no sense to take an inadequate dose because you are not deriving any benefit from it.
The mildest of the narcotics are either Codeine or Hydrocodone. These are drugs of approximately equal potency. Hydrocodone is the active drug in Vicodin, Norco and Lorcet.
Neither Codeine or Hydrocodone by themselves are very potent painkillers. However, when combined with aspirin or Tylenol, they are quite effective for mild to moderate pain.
The next level up in terms of potency is Oxycodone. This is the principal drug in Percodan and Percocet (as well as the various generic forms of these drugs). It is also the drug found in OxyContin and OxyIR. Again, by itself, Oxycodone is a fairly good painkiller but it works better when combined with aspirin or Tylenol as in the case of Percodan or Percocet.
The less potent narcotics such as Codeine and Hydrocodone are effective by mouth. Codeine can be given by injection but it is rarely administered that way anymore.
Oxycodone falls somewhere in the middle. It is a fairly potent narcotic, especially in higher doses and it is effective by mouth. In lower doses, Oxycodone is very effective for moderate pain and in higher doses it is effective for more severe pain.
The most potent of the narcotics can be given by mouth but they are much more effective when given by other routes of administration. For example, a drug that might be considered the next step up the line is Morphine. In a hospital setting, Morphine is given either intramuscularly or intravenously in which case it is extremely effective for severe pain.
There are, however, a number of oral preparations of Morphine which are also effective for more severe pain but it requires much higher doses to achieve that effect.
For those people who do not obtain adequate pain relief from the lower dose or less potent medications, the narcotic Fentanyl is usually the next step. This drug is very short acting and, therefore, has to be given in a continuous administration form, most commonly as a dermal patch. The brand name of this drug is Duragesic.
There are other drugs that can be used on occasion with varying degrees of effectiveness. One such drug is Stadol. It is available as a nasal spray. I have patients who swear by it and find it to be an extremely effective painkiller. I have other patients who have tried it and found it to be essentially useless (this is true of most painkillers).
Another drug that has been around for many years is Talwin. Talwin was originally brought on the market as a supposedly non-addicting narcotic. It was quickly discovered that this was not true. In its “native” form it has to be given by injection. However, it is available in oral form when combined with Tylenol and the brand name is Talacen.
Ultram is another drug that can be tried. It is not a narcotic and at this time does not appear to be addicting or habituating. However, it is a very sedating drug and many people cannot tolerate it.
There is one extremely important fact to keep in mind when talking about pain management. If you have acute pain such as a headache then it is perfectly acceptable to take a short acting painkiller to get rid of that pain because the expectation is that when the medication wears off, the pain will no longer be an issue.
However, this is not the case when dealing with chronic pain. If someone is in chronic pain and waits for their pain to become severe before taking a medication for relief, they will always be one step behind and they will actually require larger doses of medication to control their pain.
The basic principle of chronic pain management is to maintain a constant level of the medication in your blood stream. You get better pain relief at lower doses.
Because of this, long acting drugs such as OxyContin, MS Contin, or Avinza are very valuable in helping chronic pain patients deal with their issues. As I have already mentioned, the Fentanyl patch is also very effective. All of these medications share the same basic approach - they maintain a constant level of medication in the blood stream.
It is also important to keep in mind that the purpose of pain control is not just to make you feel better and allow you to become functional, it is also to help “down regulate” the nervous system. This helps in the long run to minimize the contribution of neuropathic pain and thereby allow all the various “diseases” that we now realize are the result of neuropathic pain to resolve.
No medication is without its side effects. The choice of what drug to use in any one given patient depends not only on the severity of the pain but whatever else they can tolerate for other reasons. Virtually all narcotics will produce some degree of itching in some people. Many people think this is an allergic reaction to the drug - it is not. It is a side effect.
Narcotics also tend to constipate. One of the original drugs for diarrhea (one that is still available) is Paregoric. Its main active ingredient is simply dissolved opium powder.
Many people find narcotics to be very sedating. Sometimes we have to try a number of different drugs before we find one that not only provides pain relief but whose side effects are not worse than the underlying problem that we are trying to deal with.
Demerol is another drug that has been around for many years. It was originally devised as an alternative to Morphine and the other potent narcotics. Demerol is commonly used by many physicians in hospitalized patients. However, many people do not get adequate pain relief from Demerol for a very simple reason - it is not as good a narcotic as many people think it is. Demerol requires much larger doses than are commonly used to achieve the same degree of pain relief and at the high doses the side effects often become unacceptable.
Demerol is available in oral form. By the oral route, it is probably about as potent as Percocet. I rarely use it because I think there are better drugs. However, there are occasional patients who do seem to get better relief from this than from other pain medications.
There are several drugs which I wish to mention just for the sake of completeness. The first is Darvocet. I still get requests for this on occasion.
I believe Darvocet is notable only for the fact that, many years ago, people figured out how to abuse it. In the original formulation, the active ingredient was placed into a tiny gelatin capsule that was then encased in an outer package with fillers, etc. People quickly learned to extract this tiny capsule and break it open. They did report getting a mild high from it. Since then, the drug has been reformulated so that this is not possible.
A study was published in the New England Journal of Medicine many years ago. People were given identical looking capsules - some Darvocet and some aspirin (the equivalent of two adult strength aspirin). When people were given the identical looking capsules, guess which one gave better pain relief? You would be right if you said the aspirin.
Occasionally, I will see someone who claims that Darvocet is the only drug that gives them any significant pain relief. If these people insist upon it, I will prescribe it. Otherwise, I consider it to be a relatively useless drug.
Two other drugs that also deserve mention are Midol and Pamprin. If you read the ingredients, they are basically acetaminophen (Tylenol) with a few other things thrown in. My personal opinion - these drugs are nothing more than overpriced Tylonel. The other ingredients really do not contribute anything of significance. One of them contains pyrlamine – an old antihistamine – which may make you a little sleepy. Why they put it into a drug such as this is beyond me unless the manufacturers feel that if you are tired, your other symptoms won’t bother you so much. Another contains caffeine. Again, I am not sure why it is there except to give you a little boost. A cup of coffee would do as much. You would be better off buying a regular bottle of aspirin.
TREATMENT OF SPECIFIC DISEASES
GYN CAUSES OF PELVIC PAIN
In addition to treating the pain itself with narcotics as I have discussed, it is also important to try to treat the specific diseases or conditions that may be present in the hopes that this will also help control the overall syndrome.
GYN disease is a common cause of pelvic pain (though not always as common as many people believe). Treatment directed at these specific diseases is often very helpful.
The most widely known of these diseases is endometriosis. Since endometriosis is, in large part, a hormonally dependent disease, shutting down ovarian function is often a very important part of the therapeutic mix. Although there are many drugs that will do this, the most effective drug is Lupron. Lupron does not create a menopausal state - it does create a situation that reproduces some of the symptoms of menopause and it also suppresses ovarian estrogen production down to essentially undetectable levels.
Ovarian suppression has two beneficial effects. First, it takes away the hormonal support for the endometriosis and the disease will then regress to a considerable degree. Whatever pain may have resulted from the endometriosis is usually significantly improved and, in many instances, may be completely eliminated.
The other benefit of Lupron is the fact that, regardless of the cause of the pain, suppressing estrogen affects the way your brain processes and responds to pain input. The lower the estrogen level, the less your pain seems to bother you. This is why almost any problem a woman has worsens when she is premenstrual. It is the hormonal changes associated with the menstrual cycle that affects the way your symptoms.
Therefore, Lupron is often of considerable benefit for many of the other conditions that cause pelvic pain even though they are not considered to be estrogen dependent diseases.
Other drugs that can also be used to suppress ovarian function include continuous Provera or continuous Aygestin therapy.
Continuous oral contraceptive therapy (so called pseudo pregnancy) is often effective but not as effective as other therapies and I tend not to use this approach unless nothing else seems to work.
I mention Depo Provera only to tell you that I, like many other specialists in pelvic pain, would rather not use this drug unless we have no other choice. Depo Provera is not a totally innocuous drug, especially for the woman who desires future fertility. It can create significant problems with her menstrual cycle in terms of resuming ovulation when the drug is discontinued. Depo-Provera is also associated with a significant degree of bone loss and breakthrough bleeding is not rare.
All of these approaches have the benefit of not only suppressing ovarian function, they also stop the menstrual cycle. Since women with chronic pelvic pain frequently notice a premenstrual accentuation of their pain, eliminating the menstrual cycle is another way of helping them obtain relief.
Other therapies for the GYN problems that cause pelvic pain include operative laparoscopy, occasionally open surgery, and ultimately, in some cases, hysterectomy. Which therapy is best for each woman depends upon numerous factors that have to be individualized.
Treatment of interstitial cystitis also requires a multi-pronged approach. As I discussed earlier, it is a disease predominantly of the nervous system but the bladder is often affected directly as well. The basic treatment of IC is to calm the nervous system down and also to help control some of the bladder symptoms.
Calming down the nervous system employs the use of two principal drugs - tricyclic anti-depressants such as Elavil and drugs that affect the way your nervous system transmits and responds to pain. Neurontin was for a long time the principal drug. It has been used to treat reflex sympathetic dystrophy and diabetic neuropathy as well.
Recently, a new drug has come on the market - Cyimbalta. Cymbalta is not only an anti-depressant, it is also effective for neuropathic pain and, therefore, may replace Elavil and Neurontin but it is too soon to know for sure.
Antihistamines play a significant role in treating IC since histamine release from the mast cells in the wall of the bladder are a major cause of the pain associated with IC. The antihistamines that are used must be the older types such as Benadryl. The newer, non-sedating, antihistamines are not effective.
Hydroxyzine (brand name Atari or Vistaril) is a mild tranquilizer/antihistamine that has been around for many years and is also often very effective in the treatment of IC.
Drugs that tend to slow down the bladder somewhat such as Detrol or Ditropan are also of benefit in helping control the symptoms.
As I have discussed, in many people with IC, the protective GAG layer in the bladder is disrupted. Elmiron is a drug that helps the bladder repair this layer. You must understand that the beneficial effects of Elmiron are often not seen for three to six months.
Elavil also helps slow down the bladder so it has multiple sites of action which enhances its overall effectiveness.
Another important part of the treatment of IC is dietary modification. Any food that tends to be irritating to the bladder will worsen the symptoms. Different people will respond to various foods differently and, therefore, it often becomes a matter of trial and error.
The Interstitial Cystitis Association website has a list of foods that you probably should avoid. It is a good place to start although keep in mind that this website tends to describe worst case scenarios.
Making the urine less acid is also important in helping to control IC symptoms. Prelief is an over-the-counter drug sold for relief of upper GI symptoms. However, it also can be very effective in relieving the symptoms of IC.
The treatment of IBS is largely symptomatic. If possible, we try to identify which of the three predominant IBS syndromes a given patient has and then we try to treat the symptoms that are most distressing to her.
Regardless of anything else, fiber is one of the most important treatments for IBS. However, fiber by itself is not very effective. It must be combined with 6 to 8 glasses of water a day.
For people with diarrhea predominant IBS, drugs that slow gastrointestinal motility such as Bentyl are often very effective.
For people with constipation predominant IBS, Zelnorm is often quite effective.
Another therapy that is often of benefit for people who are chronically constipated is the use of osmotic laxatives such as Milk of Magnesia and even occasional use of plain enemas is often necessary.
I caution you not to use stimulant laxatives such as Senokot, Cascara, Dolkolax and related products. The long-term use of such drugs can permanently damage the bowel.
For people with the pain, bloating, and gas predominant form of IBS, as I noted earlier, enteric coded peppermint oil is often of benefit. Your pharmacy will probably not have it in stock and will need to order it for you.
Over-the-counter anti-gas products such as Beno, Gas-X, Mylecon, etc. are also quite effective.
Women with symptoms coming from their pelvic floor will require physical therapy to help deal with these issues. Please understand that most physical therapists are not particularly well versed in the treatment of pelvic floor disorders. However, there are several physical therapists in the Metropolitan Philadelphia area who have significant expertise in the treatment of these problems and I will make sure that you get their names so that you can see one of them.
These physical therapists do a lot more than just help you with your pelvic muscles. They also will give you a thorough exam to determine if you have any other musculoskeletal issues such as perhaps a short leg syndrome or other problems that could be contributing to the pelvic floor pain.
Treatment of the pelvic floor pain is critically important. If your pelvic muscles do not work right, you will not be able to urinate properly and you will not be able to move your bowels properly. This simply compounds whatever other problems you may have with regard to IC or IBS.
Always keep in mind that a problem with one system often worsens other conditions as well.
MYTHS ABOUT PELVIC PAIN
As is much of medicine, there area great deal of myths and misconceptions about the cause and origins of pelvic pain. I have already mentioned some of them. Many women are told that they have dysmenorrhea because their cervix is too tight.
One very common problem which is blamed for a host of symptoms is the retroverted or “tipped back” uterus. Many women have a uterus that tilts backwards rather than the more common forward position. However, this retroversion of the uterus is a normal variation - it is not pathologic.
In and of itself, a retroverted uterus produces no symptoms. It does not produce pelvic pain, it does not produce painful intercourse, and does not interfere with a woman’s ability to conceive. Some women are told they must adopt different positions for intercourse in order to get pregnant simply because they have a retroverted uterus. This is utter nonsense.
At one time, women are subjected to all sorts of exercises, changes in positions, and even surgery in an attempt to correct what is nothing more than a normal anatomic variation.
It is true that some women with a retroverted uterus do experience pelvic pain. This is almost always because there is some associated pelvic pathology. Many women with a retroverted uterus have it in that position because of scar tissue holding it there. In such instances, it is the scar tissue, not the position of the uterus that is producing the pain.
Probably the biggest myth concerning pelvic pain is the one that I have already mentioned-namely, that pelvic pain in women is psychosomatic. To be sure, emotional factors do influence the severity of pain that one experiences. Some people tolerate pain than others. However, there is no doubt in my mind that pelvic pain is caused by organic disease.
This does not mean that there cannot be instances of pelvic pain due solely to psychosomatic problems. There has been some evidence recently that women who are battered wives may experience pelvic pain on a purely psychosomatic basis. This pain may be “their cry for help”. However, this information is too new for me to have begun to evaluate it properly and I am unable to comment at this time as to its validity. However, many people feel that even psychosomatic pain, since it is not based on organic pain, is not real. This is another myth. Psychosomatic pain is just as bad as organic pain-sometimes even worse.
HYSTERECTOMY AND OVARIAN REMOVAL
Hysterectomy has long been one of the standard therapies for chronic pelvic pain. One of the longest running and perhaps one of the most hotly contested debates in gynecologic surgery has been whether ovaries should be removed at the time of hysterectomy. Everyone would agree that if the hysterectomy were being done for benign disease such as fibroid tumors, or even for certain cancers such as cancer of the cervix, ovarian conservation is certainly appropriate and probably even important. The question is whether or not the ovaries should be removed for those women undergoing hysterectomy for chronic pelvic pain and/or endometriosis.
Until recently, all the data and the belief of most experts was that ovarian removal was necessary if you were going to solve the patient’s pain problem. However, a study was recently done at the University of Maryland. It was about as good a study as one could ever do. The authors of this study recruited as many gynecologists in the state of Maryland as they could and over 1200 women were enrolled in the study.
It was a prospective study which is the proper way to do something like this. The questions they were trying to answer was whether hysterectomy was a valid therapy and whether ovarian removal at the time of hysterectomy had any significant effects on the woman afterwards not only in terms of pain but in terms of sexual functioning, etc.
This was a two year prospective study. Data was collected pre-operatively and then at 3, 6, 12, 18, and 24 months post-operatively.
To be eligible for this study, the woman had to be over the age of 18. The hysterectomy had to be done for a presumed benign condition and it had to be a planned hysterectomy - no emergencies were included.
Women were included in this study if they had a pre-operative diagnosis of chronic pelvic pain and this was the principal reason for their hysterectomy - pain or endometriosis. They had to have told their physician that pain was a large or medium problem over the past month and the condition caused “a lot” or “some” daily discomfort.
Even if the patients had a previous diagnosis of chronic pelvic pain, they were excluded if the pain was not a significant issue in their life.
In the study, there were a total of 623 patients. 128 had chronic pelvic pain only, 330 had endometriosis only, and 165 had both.
There were several questions that this study wanted to answer. First - Is hysterectomy an effective treatment for women with chronic pelvic pain? As I have mentioned, the study clearly showed that approximately 80% of the women were “cured” - they reported no pain. Approximately 20% were improved with some pain. Less than 1% were the same or worse.
The other question that this study wanted answered was - Does removing the ovaries make a difference? What was found was that women who had both ovaries removed tend to be older than women whose ovaries were left in place.
For those women undergoing hysterectomy for endometriosis, the variables they looked at were whether the woman was still having pain, how many days of pain she had, whether her pain was still a problem, how many days each month she had to take pain medication, how she rated her pain, whether she was using Schedule II narcotics (Percocet, Oxycontin, Duragesic, etc.), whether they were using drugs like Motrin, and the frequency of painful intercourse.
Overall, in women with endometriosis, none of these variables were different in the ovarian removal group as opposed to the ovarian conservation group.
Looking at women with only chronic pelvic pain, there was a small but significant difference one year after the surgery in terms of how many were still having pain and how many days of pain they had each month. However, by the second year, this difference had disappeared.
For women who had both chronic pelvic pain and endometriosis, the number of days that they took pain medication each month was significantly different at the two year mark. All other variables were the same.
Even though some of these things were statistically significant, they were of borderline significance and probably due to chance.
They also looked at quality of life variables. For those women with endometriosis, one year after the surgery more were depressed but, by two years, this difference had disappeared.
At two years, there was a significant difference in terms of what the patient described as “low activity level” but otherwise all other variables that they looked at were the same. This included depression, fatigue, anxiety, poor physical functioning, poor mental functioning, poor social functioning, and poor health perceptions.
When these variables were looked at in women with chronic pelvic pain only, there was no difference.
Similarly, when they looked at women with both chronic pelvic pain and endometriosis, there was no difference.
One of the things that they looked at carefully was sexual functioning. In women with endometriosis only, 12 months post-operatively, there was slight increase in the frequency of orgasm in those women who had had their ovaries conserved and a slight decrease in the frequency of orgasm in those women whose ovaries were removed. All other sexual variables including desire for sex and frequency of sex were the same whether the ovaries were removed or left in place.
For those women who had chronic pelvic pain but no endometriosis, there was a decreased frequency of intercourse in those women whose ovaries had been removed. All of the other sexual variables were the same.
For those women who had both chronic pelvic pain and endometriosis, there was no difference in sexual functioning depending upon whether the ovaries were removed or not.
As was noted earlier in this discussion, women whose ovaries were taken out were significantly older than women whose ovaries were left in place and, therefore, the question was whether or not sexual functioning was more related to age than ovarian status. When they looked at this specifically, there conclusion was “there is minimal if any effect of ovarian removal on sexual functioning”.
The conclusion of this study was as follows:
1. Chronic pelvic pain or endometriosis are not key factors in the decision to remove ovaries.
2. Outcomes were essentially identical with respect to pain, sexual function, and quality of life whether or not the ovaries were removed.
3. Hysterectomy was very effective in treating pain in women with chronic pelvic pain.
There is a flip side to all of this. There are many years of accumulated data that women undergoing hysterectomy for endometriosis have a 90% chance of being pain free or substantially better if the ovaries are removed.
Although I have always favored ovarian retention whenever possible, if a woman undergoes such significant surgery such as hysterectomy for pelvic pain, I believe that she should be given the best chance possible of being pain free afterwards and that means removal of the ovaries.
The issue of chronic pelvic pain is so complex that many comments do not fall neatly into a given section — hence the following.
In 1980, a group of women in Milwaukee, Wisconsin started the Endometriosis Association. They did so because they were angry and frustrated. These were women with Endometriosis who went from doctor to doctor complaining about pain and they found it almost impossible to get any physician to take their complaints seriously.
The purpose of the Endometriosis Association was and still is, in large part, educational. Not only have they done an exemplary job of educating women about their disease, they have also educated physicians. Much of the better information that many Gynecologists now have about Endometriosis is due to the efforts of the Endometriosis Association.
The Endometriosis Association has become so successful that it is now an international organization and is an active sponsor of the World Congress of Endometriosis which take place every several years.
The laparoscope was introduced into Clinical Practice around 1970 and by the time the Endometriosis Association was formed, a substantial percentage of Gynecologists had been trained in its use. As more physicians became aware of Endometriosis and as more and more laparoscopies were carried out, we began to appreciate how common Endometriosis is. In fact, it quickly became apparent that a very substantial number of women had Endometriosis.
Women under going laparoscopy for pelvic pain were frequently found to have Endometriosis. However, it quickly became apparent that women under going laparoscopy for other reasons, such as infertility, were also found to have Endometriosis and a substantial percentage of these women had no symptoms. This further substantiated what had been known for a long time, namely that there is no correlation between the presence of Endometriosis and the symptoms it may produce, most notably pelvic pain.
Recent data from Belgium showed that in women undergoing a laparoscopy for infertility were found to have Endometriosis 50% of the time. Women undergoing a laparoscopy for pelvic pain were found to have Endometriosis about 70% of the time and women under going laparoscopy for infertility who had pain as well were found to have Endometriosis about 80% of the time.
When laparoscopy first came in to wide spread use and many infertile women were found to have Endometriosis, the natural assumption was that the Endometriosis was causing the women’s infertility and consequently, these women were all treated.
It did not take very long for infertility specialists to realize that treating early Endometriosis did not affect a women’s ability to become pregnant. This has been proven time and time again by numerous scientific studies. It is now well documented that treating early Endometriosis does not improve a women’s chance of becoming pregnant — although, under certain circumstances it may increase the rapidity with which she does become pregnant. Treating only the more advanced stages of Endometriosis will improve a woman’s chances of conceiving.
Over the last five to ten years, additional studies have been carried out. These studies quite clearly demonstrate the presence of Endometriosis in many women who have no symptoms whatsoever and furthermore, many of these women have had children previously. A study that was carried out looking at the incidence of Endometriosis in women under going a tubal ligation showed that the likelihood of finding Endometriosis was directly related to how much time had elapsed since the woman’s last pregnancy. In other words, the more years since the woman was last pregnant, the more likely Endometriosis will be found. In most of these women, the Endometriosis was producing no symptoms.
Other studies have looked at the natural history of early Endometriosis. If women with early stage Endometriosis are simply followed without therapy and under go a second laparoscopy 6 months after the first one, in about 25 % of the cases, the Endometriosis will have disappeared completely. In 50% of the cases, the Endometriosis will be the same as it was at the time of the first laparoscopy and in only about 25 % will it be worst.
It is now becoming a widely accepted concept that many women will temporarily develop early stage Endometriosis that then spontaneously disappears. Given this fact, how can we begin to evaluate women with early stage Endometriosis who are also in pain. The question is now being raised whether the mere presence of early stage Endometriosis is sufficient to explain a woman’s pain.
I am going through this lengthy discussion because it is important to realize that because of the excellent work done by the Endometriosis Association, we have appreciated how common Endometriosis is. However, it is now becoming apparent that, as in the case of infertility, just because a women has Endometriosis and is in pain does not mean that there is a cause and effect. This is further born out by the fact that treating early Endometriosis by laser laparoscopy will have little or no effect on the Endometriosis in the majority of cases. (Although some women will be helped). furthermore, hormonal suppression using either Danocrine or Lupron/Synarel does not always relieve the pain of early Endometriosis either. As I pointed out earlier, only 20% of women with chronic pelvic pain have reproductive tract disease, such as Endometriosis, as the cause of their pain. I cannot say too often that it is important to identify each and every pain generator if we are going to help reduce the severity of the woman’s pain.
As a matter of fact, the laser laparoscope may create as many problems as it solves. Because many women will respond to laser laparoscopy, even with early stage Endometriosis, I certainly believe that it should be tried. However, if one laser laparoscopy does not substantially relieves a woman’s pain, then repeat laser laparoscopies are guaranteed to make it worst. Furthermore, as we become more sophisticated, we are beginning to understand that not all these lesions produced by Endometriosis are equally important in terms of producing pain. However, this is still not a well resolved issue. None the less, it is also becoming apparent that those individuals who have recommended removing all the Endometriosis in the pelvis on the theory that they are going to “cure the disease” are acting upon erroneous information and an erroneous concept of the disease.
The concept I want you to draw from this initial discussion is that just because a woman has pain and also happens to have Endometriosis does not mean that there is a cause in effect. Furthermore, as has been proven time and time again, treating the early Endometriosis will often not relieve the pain.
How can this information be used to help those women who are in pain and who happen to also have Endometriosis? How can this information be used to help those women find relief from their pain?
The situation is completely analogous to women who are infertile with early Endometriosis.
If a woman is infertile and has early Endometriosis, you simply ignore the Endometriosis because that is not what is keeping her from becoming pregnant. Similarly, if a woman has significant pelvic pain and has early Endometriosis, particularly if usual therapies have not helped her in the past, then you must ignore the Endometriosis and begin a search for the true cause of the woman’s pain.
By the time women come to my office with these type of problems, they have usually been through numerous evaluations including a full urologic work-up, a full GI work-up, and usually numerous other studies as well.
Over the past five years or so a number of Chronic Pelvic Pain Centers have been established through out the United States. Information gathered by these centers, has revealed something which we believed to be the case but never had good proof. Namely that emotional factors play a very important role in Chronic Pelvic Pain particularly for those women whose pain is substantially out of proportion to the amount of disease visible at the time of laparoscopy.
Depending upon which study you want to quote, it is estimated that 25 - 40% of women in the United States were abused as children or as adolescents. Often this abuse was sexual or these women were the victims of rape. Many of them were physical abused in other ways and many of them were psychologically abused as well. If we take the 25% figure as a conservative estimate for the incidence of abuse in the general population, most studies from Chronic Pelvic Pain Centers have shown that 60 - 75% of the women attending these centers admit to being sexually abused or from having suffered some other form of abuse as a young person. If 60 - 75% will admit to it, undoubtedly the true figure is much higher.
My own experience in this has not been the same. Some of my patients do admit to having abused or rape as a younger person — just not as many as some studies have suggested. Regardless of how much organic pelvic disease they may have (even if it is severe Endometriosis) it must be fully understood that unless the woman begins to deal with the emotional factors involved, she will never be pain free.
Unquestionably these issues are extremely sensitive and extremely delicate to deal with. It is for this reason that the treatment of chronic pelvic pain in woman should involve a knowledgeable and sympathetic psychologist.
There is no doubt that emotional factors play a role in probably all types of chronic pain. Even chronic back pain has a substantial emotional component. Emotional stress will often trigger an attack of back pain. It will certainly make it worst.
Another important issue that has not yet been fully resolved is whether or not there is such a thing as totally psychogenic pelvic pain. Now that we are recognizing that almost every woman will probably develop Endometriosis at least temporarily, to a certain degree whether or not Endometriosis is diagnosed in a given woman, particularly at the early stages of the disease, maybe more a matter of luck and coincidence.
On the other hand, for the most part, women undergoing a laparoscopy at which Endometriosis is found are having the surgery for a specific reason. Therefore the discovery of Endometriosis does have significance, although perhaps not as much as is often believed. I do believe that making the diagnosis of Endometriosis is sometimes a disservice to the woman. Once that diagnosis is made, then everything that happens to her afterwards is automatically blamed on the Endometriosis, justifiable or not. Other causes of pelvic pain are overlooked and the women suffer needlessly.
MONITORING OF CHRONIC PAIN PATIENT’S MEDICATIONS
It is critically important that my office keep very careful track of the therapies you are receiving. It is not only good medicine, it is also legally necessary. Please read this carefully. There will be no exceptions.
We will, therefore, require from you two things - a drug log and a drug agreement. The drug log is simply a record of all the medications you take and when you take them. This form will be given to you every time you come to the office. IT MUST BE FILLED OUT EACH TIME. I will not renew any medications for you unless the record has been reviewed.
Secondly, I will require that you sign an agreement that you will adhere to all the rules that we may require from time to time. One of the most important rules (a rule that is fairly standard in most practices such as mine) is the understanding that you will not receive any controlled drugs from any other physician without my knowledge. Controlled drugs are drugs that require a DEA number. DEA stands for the Drug Enforcement Administration. All physicians who prescribe controlled substances must register with the federal government and we are given a specific number that must appear on any prescription for a controlled substance.
There is only one exception to the rule that I must be the only physician prescribing controlled substances. If I am on vacation, my office staff does not have the authority to renew any pain medications you may be taking. If you develop severe pain and I am unavailable, you need to go to either your primary care physician or a hospital emergency room. In the event of such a necessity, you must let me know what happened the next time you are in the office. You must tell me why you had to contact another physician and you must tell me what medications were prescribed.
If you are seeing another physician for other types of pain such as a neurologist or a physical medicine physician or whomever, I certainly have no problem with that physician prescribing medications such as Topamax or muscle relaxants or any of the other types of medications frequently used to help control various problems such as migraine headaches. However, the rule remains - I must be the only one to prescribe medications that would fall under the classification of narcotics. If it turns out that any other treating physician is the one prescribing the narcotics, that is fine with me. Under those circumstances, I will not prescribe them. This is a basic rule in pain management.
Controlled substances include but are not limited to narcotics. They also include tranquilizers of certain categories such as Valium, Ativan, Xanax, etc.
We recognize that there may be an occasional emergency situation such as the need for dental care when you might be given a narcotic for a specific purpose. If this situation should arise, you must contact the office and let us know at your earliest opportunity. Usually, this will mean the next day that we are in the office.
We must also insist that if you are having pain that you NOT go to an emergency room. Many pain patients use this as a ploy to obtain additional medications.
You must agree that you will use only one pharmacy for your controlled substances. Make sure the pharmacist knows that you are taking these drugs for control of chronic pain. Therefore, it is highly preferable that you use a small, privately owned pharmacy rather than one of the big chains. That way, the pharmacists get to know you and know your situation.
At the time of each office visit, you will be given enough medication to last until your next scheduled visit. Depending upon the situation, I will see you every month or perhaps every two months in selected cases.
If you do not keep your scheduled appointment, you will not be given any medication until you come into the office.
If the amount of medication you have been given is not sufficient to control your symptoms and you have been taking more than we had originally planned, you must come into the office for re-evaluation.
No prescription for pain medication will be phoned into a pharmacy. If you require additional medication for any reason, you must come to the office for re-evaluation.
No prescriptions for narcotics will be given outside of regular office hours, i.e. nights, weekends, holidays, etc. If it is outside of normal office hours and you are having pain that has become intolerable, you must go to a hospital emergency room for evaluation.
You must take personal responsibility for your medications. Narcotics are one of the most common types of drugs to be stolen. If you lose your prescription, you will not be given another prescription until you are scheduled for your next visit. If your drugs are stolen, you must produce a police report before another prescription is given.
If any of these rules are broken, I will give you enough medication to wean you from your drugs and, after that, no more narcotics or other controlled drugs will be prescribed.
Please understand that there are many checks and balances built into the system. Sooner or later, we always find out who has been abusing the care that we provide.
If we learn that you have not been following these rules - rules that we do not believe are at all burdensome or difficult to follow - it will be grounds for your immediate dismissal from my practice.
Pain is an extremely common and extremely complex problem in medicine. Much research is being done to seek out the answers both as to the cause of pain and its treatment. There are many people in this country with chronic pain often due to arthritis, etc. for whom no satisfactory solution exists. Much suffering occurs as a result of this and many people are searching for a solution.
Pain is a common presenting complaint in gynecology as in any field of medicine. My experience has taught me that the vast majority of women who present with pelvic pain have a detectable cause which is at the very least diagnosable with a high degree of accuracy and then, once the diagnosis has been established, appropriate therapy can be undertaken.
No woman should ever leave a physician’s office thinking that because she is in pain, she is nuts; sadly, based on the many stories I have heard over the years, that is not a rare occurrence.
Chronic pain is a major health problem in the United States. Depending upon what statistic you care to read, as many as 75 million Americans may be affected by chronic pain of one type or another. Individuals who suffer from chronic pain create major health and economic problems for themselves and for their families and society as a whole. Obviously, most important, there is the problem of dealing with the patients themselves and searching for some satisfactory solution to their pain. Unfortunately, for many people with chronic pain, there is no satisfactory solution.
Most chronic pain involves individuals with back injuries, arthritis and related disorders and patients with cancer.
In some respects, patients with cancer may be somewhat better off (I do mean this facetiously). If a patient has cancer and is in severe pain. that pain is usually the result of metastatic disease and therefore, will ultimately be fatal. For these individuals, the use of narcotics, even in large doses, is necessary therapy and by the use of large amounts of narcotics, these people can be kept very comfortable in the majority of instances.
For women with chronic pelvic pain, they must face the possibility that they will be in pain for much of their lives, although menopause frequently ends the pain. Even if the pain is due to something other than Endometriosis, abolition of ovarian function often eliminates the pain. Until such time (if a woman wishes to retain ovarian function), a solution must be found that will not necessarily cure the pain or eliminate it completely but will allow a sufficient degree of control that the woman can lead a normal, productive life.