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

PAIN OVERVIEW

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.

INTRODUCTION

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

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

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

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.

URINARY TRACT

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. 

INTESTINAL TRACT

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