Treatment of Endometriosis

Introduction

Definition
Incidence
Cause
Symptoms
Intestinal Endometriosis
Infertility
Diagnosis
Treatment
Adenomyosis
Are you too young to have
a laparoscopy?
Endometriosis and cancer
Treatment summary
Endometriosis and heredity

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The therapy of Endometriosis has undergone a great deal of evolution over the past 10-20 years which reflects not only better therapeutic modalities but also a better understanding of Endometriosis. It is important to recognize that Endometriosis is principally (but not totally) a hormonally dependent disease. As long as there is ovarian hormone production, there will be the continued presence of Endometriosis.

It is also important to understand that women have a considerable amount of Endometriosis that is "invisible". By this, I mean that the Endometriosis is either not visible at the time of laparoscopy because it is buried underneath other tissues (as is the case with invasive disease) or, just as importantly, the implants may be microscopic. It is these two facts that forms the basis of much of the therapy of Endometriosis and also explains the failures.

As part of any discussion of the treatment of Endometriosis, it is critically important to understand the following. There are 3 objectives in treating Endometriosis - controlling pain, controlling the disease itself, and enhancing fertility. You can always treat 1 of the 3 at any one given time; you can sometimes treat 2 of the 3; you can never treat all 3 at the same time.

Prior to the 1950's, Endometriosis was a purely surgical disease. Women with severe pelvic symptoms but with normal pelvic exams were ignored but those with obvious abnormalities on pelvic exam underwent open surgery. Those in the latter group were then told to go home, get into bed, and stay there until they conceived.

In the 1950's, the late Dr. Robert Kistner from Boston recognized the beneficial effect of pregnancy on Endometriosis. He was also one of the physicians doing research on the hormones that were destined to become birth control pills. He therefore reasoned that if pregnancy helped Endometriosis, creating a "pseudo-pregnancy" state using hormonal therapy would also help. This formed the basis for the first non-surgical treatment for Endometriosis. High dose, continuous oral contraceptives were used to stop a woman's period for 6-9 months. Unfortunately, side effects were common and many women could not complete the entire course of therapy. Furthermore, the initial claims that this treatment improved a woman's chances of conceiving were later shown not to be valid.

Nonetheless, some women were helped, and even today, I use a modified "pseudo-pregnancy" regimen, placing a woman on continuous BCP for 3-4 months at a time. This often relieves the symptoms of Endometriosis while minimizing the side effects of the pill.

The observations of Dr. Kistner formed the basis of the hormonal therapies so commonly used today. However, there may be a basic flaw that explains why hormone therapy is often ineffective. Dr. Kistner and others assumed that it was the continuous exposure of the Endometriosis to the high levels of hormones produced during pregnancy that was responsible for the remission of the disease.

Although the data is still limited, we now know that significant changes are occurring in a woman's immune system during pregnancy. Keep in mind the fetus is a genetically unique being, different from its mother. One question for which we would love to have an answer: Why does not the mother reject her fetus as a foreign body just as she would a transplanted kidney (if immune suppressant drugs were not administered)? What allows the fetus to exist in an immunologically protected state?

Knowing what we now do concerning the relationship between the immune system and Endometriosis, I can make as good an argument that it is the alteration in the mother's immune system that accounts for the remission of Endometriosis during pregnancy - not the hormonal changes. It would not be difficult to mimic to a certain degree the hormonal alterations seen in pregnancy. This might yield better clinical results than using high dose birth control pills. Undoubtedly, it is the immune system that explains why Endometriosis can arise for the first time in women long past menopause or why Endometriosis can persist even though a woman has undergone a surgical menopause.

Unfortunately, the drugs currently available to suppress the immune system create problems far worse than Endometriosis. To use them would violate the basic principle of medical care, "First, do no harm". Thus, we are left with only surgery and/or hormones to treat this disease. There is some data relating the hormone Prolactin to the immune system but it is very preliminary.

There are two approaches to the treatment of Endometriosis - it can either be treated or it can be "cured". I use the term "cured" very cautiously. Even hysterectomy does not always cure Endometriosis . The choice of therapy obviously depends upon a great many factors.

To "cure" Endometriosis, all ovarian function must be permanently eliminated. This involves hysterectomy with removal of the tubes and ovaries. By completely eliminating ovarian function in this fashion, the vast majority of women will experience almost complete relief of their pelvic symptoms. Unfortunately, I (at least) am seeing an ever increasing number of women for whom hysterectomy has been a less than satisfactory solution. These women continue to have significant pelvic pain despite their surgery.

In some of these cases where the woman has persistent symptoms after "complete" removal of the reproductive organs, it is often found that a small piece of ovary was left behind at the time of her initial surgery. This is called the "ovarian remnant syndrome". Surgery to remove the retained piece of ovary is much more difficult than a hysterectomy and often has a higher rate of complications. Unfortunately, these women usually continue to have pain because of the severe adhesions which result from the numerous surgeries they must undergo.

There is a commonly held myth that hysterectomy alone is an adequate cure for Endometriosis. In fact, 40-50% of women who undergo hysterectomy alone with retention of their ovaries (one or both) will be back in the operating room within five years to have the ovaries removed. Some studies (and my own personal experience) would indicate that the number is much higher and the interval to the second surgery is much shorter. A newsletter from the Endometriosis Association supports these facts.

There is a countering belief however which holds that the ovaries should be retained and that you should take your chances as to whether or not subsequent removal will be necessary. European gynecologists are the chief proponents of this. To be sure, with modern techniques, removing ovaries by laparoscopy is usually not difficult, but it can be. This not only subjects the woman to the increased risk of multiple surgeries, it also increases the chance of her developing an "ovarian remnant syndrome", which is usually a major problem.

In younger women (under age 40), conserving the ovaries is an option that should be seriously considered. There is now a strong movement to conserve ovaries in all women who are not at high risk for ovarian cancer. The ovaries do not cease hormone production after menopause - they only stop producing estrogen. Ovarian androgen production (male hormone) continues and we are finally waking up to the fact that perhaps Mother Nature has a reason for this and the ovaries should be left in place. However, this is still not fully resolved and more information is necessary.

There is another myth which is quite prevalent. This myth states that after hysterectomy for Endometriosis, estrogen therapy will maintain and perpetuate the disease. Because of this myth, many women are reluctant to undergo hysterectomy because they think their problem will not be solved. Like many myths, there are instances when this is true but for the majority of women, estrogen therapy after hysterectomy does not have any effect on the disease and it regresses. Furthermore, women who undergo hysterectomy with removal of the ovaries at a relatively young age for Endometriosis will require estrogen therapy for the prevention of osteoporosis, heart disease, and other complications of menopause.

After complete removal of the uterus, tubes and ovaries, most women can be successfully treated with the drug Megace. This will suppress the hot flashes and allow the Endometriosis to regress. Estrogen therapy can then be started 4-6 months later with less chance that the Endometriosis will be activated. However, some studies have shown than women who start Estrogen immediately following a hysterectomy do not suffer any greater or more frequent recurrence of the Endometriosis than women who delay Estrogen therapy for 6 months or more.

There are several organizations whose sole reason for existing is to talk women out of hysterectomy as a treatment for anything, with the possible exception of cancer (and even then, they seem to believe that hysterectomy is unnecessary). Recently, books have been published and "800" numbers are appearing all telling women not to have hysterectomies. Unfortunately, they promote a very biased and distorted view. When you read their literature, it readily becomes apparent that while they decry the use of hysterectomy, they have no viable alternatives or solutions for the woman with severe, often incapacitating symptoms. Their basic theme seems to be, don't have a hysterectomy - suffer!

To be sure, there are women who continue to have symptoms such as pain following hysterectomy. Other women may complain of sexual dysfunction, weight gain, depression, etc. It is this group that serves as the basis for all horror stories in various magazine and newspaper articles, TV talk shows, etc. Keep in mind that a basic principle of journalism states that "airplanes landing safely never make headlines". I am firmly convinced that, with proper selection, 99% of women who undergo hysterectomy for Endometriosis never regret their decision and never have any problems later. What is the most common complaint I hear following hysterectomy? - "Dr. Birnbaum, I wish I had done this a long time ago."

There are several criteria that must be satisfied before hysterectomy is entertained as a definitive treatment for Endometriosis. First, the Endometriosis must be producing symptoms that are no longer tolerable. In addition, the woman must also have reached the conclusion that she wishes no further children. Lastly, the woman should have undergone at least one attempt at more conservative management - particularly operative laparoscopy. If these criteria are satisfied, the woman is a candidate for hysterectomy.

Another reason for the failure of hysterectomy to eliminate the woman's pain is the simple fact that her Endometriosis was not the reason for her pain. I have established the "Delaware Valley Center for Chronic Pelvic Pain", similar to other pain centers which exist in other parts of the country. It is now becoming increasingly evident that just because a woman has Endometriosis and has pelvic pain, it is incorrect to automatically assume that the former is causing the latter. Directing therapy solely towards the Endometriosis causes many women to go through useless and ineffective treatments that ultimately cause more harm than good.

One common concern that women share who are contemplating hysterectomy is whether or not the surgery will be successful. If they undergo the surgery, will they be pain-free afterwards?

There is now a way to determine this with a high degree of certainty. The drugs now available to treat Endometriosis - Lupron or Synarel - simulate the effects of hysterectomy by pharmacologically eliminating ovarian function. If a woman takes one of these drugs and her pain disappears, she can be quite sure that hysterectomy will also eliminate her pain. If however, her pain persists, she ought to be concerned that surgery may not work. Perhaps there is some other cause for her pain that needs to be evaluated prior to committing to hysterectomy.

The effectiveness of GnRH suppression in relieving the symptoms of Endometriosis is so high that I am becoming more and more convinced that a woman who has Endometriosis, goes on GnRH suppression, and fails to achieve relief of her symptoms is most likely in pain for some other reason. This would explain why hysterectomy often does not relieve their pain either.

I have women in my practice with deeply invasive cul-de-sac Endometriosis who have large masses of Endometriosis in their deep pelvis. Most of these women have been rendered pain free by the use of GnRH suppression. Therefore, even in those women who have the types of Endometriosis that we know are most commonly associated with pelvic pain, if their pain is due to their Endometriosis, GnRH suppression will be effective.

There are obvious exceptions to this as there is with anything in medicine. Some women will require hysterectomy for Endometriosis even though they do not have significant pelvic symptoms because the Endometriosis is creating damage and injury to other organs that could affect the woman's life and health even though it is not producing much in the way of pain. The most common problem in this category is obstruction of the urinary tract. There are also women who undergo hysterectomy even though they would like to have children some day. In such instances, the Endometriosis is interfering with their ability to live a normal life and all other attempts at more conservative therapy have been tried and failed.

These last two categories I have mentioned are fairly uncommon. The vast majority of women who undergo hysterectomy for Endometriosis have had a least one child and the indication for their hysterectomy is unrelenting pelvic pain.

For most women with significant Endometriosis, hysterectomy will remain a valuable option. However, because of the problems which I have already mentioned, besides the often significant psychological ramifications of hysterectomy, I am also of the firm belief that hysterectomy should only be considered when all other reasonable approaches to therapy have been tried and failed.

There is another down-side to hysterectomy that I am encountering more frequently and this has to do with a woman's age. I cannot give any proof for these statements but I am convinced that the younger a woman is when she has her ovaries removed, the less well she tolerates it. At one time, I and most other physicians believed that hormone replacement therapy following surgery was an adequate substitute for what the woman's ovaries had been producing. I am no longer convinced this is true. It may true for the woman age 45 and over, but maybe not and as I mentioned above, perhaps all women should have their ovaries left in at the time of hysterectomy. However, women under the age of 40 will almost always do much better if their ovaries are left in - especially in terms of sex drive and sexual function. However, as discussed above, the woman must recognized the risk of having to undergo additional surgery if her pain or other symptoms have not been relieved.

The other approach to Endometriosis is treatment. By treatment, I mean therapy directed at controlling the symptoms and/or pelvic damage created by the Endometriosis in an attempt to relieve pain and/or enhance the woman's fertility. Such therapies are "conservative" because they conserve the woman's ability to have a child. As in many things in medicine, the choice of therapy is tailored to the woman's needs as much as possible.

There are a few basic guidelines to which I try to adhere as much as possible. However, with the disease that is as variable as Endometriosis, the rules are broken as often as they are followed.

Open abdominal surgery should be avoided unless there is absolutely no other choice. The most common reason for open surgery would be the presence of severe bowel involvement or very severe adhesions and scar tissue not safely treatable by laparoscopic techniques.

Just as an aside, women should avoid open abdominal surgery for pelvic disease whenever possible. The currently available laparoscopic techniques are such that many pelvic problems, particularly in younger women, can be treated in this way. The most common reason for pelvic adhesions is previous pelvic surgery. Much of my practice deals not with treating pelvic disease per se but rather the damage created by previous open pelvic surgery.

There is a surgical approach that combines the best of both worlds - it permits the therapy to be carried out mainly by laparoscopy but still permits an open procedure when necessary. This technique is called "Minimal Access Surgery" or "Minimally Invasive Surgery". A laparoscopy is carried out first and all that can be accomplished by laparoscopic surgery is done. Then, a small incision is made and the remaining surgery is carried out. For instance, a fallopian tube or ovary can be removed from the body, repaired, and then returned to its normal location. I have done a number of myomectomies this way. General surgeons are now using this technique for people requiring bowel surgery. I have used it quite successfully in treating tubal disease or very severe Endometriosis. Since the incision is small, the hospital stay is shorter and the recovery time is lessened.

It is critically important to keep in mind that the various medical therapies for Endometriosis do not cure it nor does "conservative" surgery cure Endometriosis. Because of the known presence of Endometriosis in other areas of the pelvis that are not visible at the time of surgery, it is fairly common to see the Endometriosis begin to recur after therapy has stopped. It is impossible, of course, to predict those women in whom the Endometriosis will recur to any significant degree and also, the rate at which the Endometriosis will recur can not be predicted.

The approach to therapy that I am going to outline in the next few paragraphs is based upon all the evidence that is currently available in the medical literature combined with my own personal experience with treating this crazy disease. As newer information becomes available, my approach will be modified. Therefore, there is a good chance that this pamphlet will even be out of date by the time you read it.

There are several factors which have dramatically altered our approach to Endometriosis and which have also significantly improved the results we obtain. These factors include a better understanding as to the origins of the disease, the factors which maintain the disease, the widespread nature of the disease even when visual inspection of the pelvis does not indicate this, the development of effective drugs to help control the disease and lastly, the development of the LASER laparoscope and related techniques of pelviscopic surgery. By combining all of these factors, effective therapy for Endometriosis is now possible for most women.

As important as our improved knowledge may be in helping to choose the best therapy for a woman with Endometriosis, it is equally important in helping to decide whom not to treat. For many women, Endometriosis may be a coincidental diagnosis and not the primary cause of their problem. Learning to make this distinction is critically important. I have many women in my practice who are in chronic pain from surgery for pelvic problems such as simple ovarian cysts that were best left untreated. They were operated on because the cyst was found during a laparoscopy at which Endometriosis was also diagnosed. The conclusion was reached that if the woman was in pain, if she had Endometriosis, and she also had a small cyst, then somehow they were all related and surgery was opted for. Once they got onto that "slippery slope", the first surgery created more problems such as scar tissue and adhesions that inevitably led to pain and then to additional therapies such as repeated surgeries.

This problem often results from one of the most common myths in Gynecology, namely that ruptured ovarian cysts are a cause of pelvic pain. A large part of my practice involves the treatment of women with pelvic pain. I commonly see women who are having pain who have been told that their symptoms are due to an ovarian cyst that burst.

The usual scenario runs something like this. A woman is experiencing pelvic pain and she goes to her gynecologist. A pelvic examination does not reveal any evidence of a cyst or other obvious abnormalities. An ultrasound examination is then ordered which shows fluid in the deep pelvis. The woman is then told that the fluid represents a cyst that ruptured or burst and that was the cause of her pain.

It sounds very good; it sounds very plausible; it sounds very reasonable. It just doesn't happen to be true. Most ovarian cysts do not cause pain, particularly smaller ones. Even those that do cause pain usually cause only mild discomfort or perhaps a vague awareness that there is something there. Severe pain is only rarely due to an ovarian cyst. One thing is certain - endometriosis cysts almost never cause pain unless they rupture.

Keep in mind that in normally ovulating women, an ovarian cyst ruptures every month. The follicle in which the egg develops is a cyst. The process of ovulation involves the rupture of the follicle wall followed by the expulsion of the egg. This does not cause pain. The pain that women experience at the time of ovulation is due to the rapid growth of the follicle with stretching of the follicle wall just prior to ovulation. Ovulation with collapse of the follicle actually relieves the pain.

The most common cause of chronic pelvic pain in women is endometriosis. Women with endometriosis often have larger amounts of fluid in their pelvis than women who do not have endometriosis. Therefore, it would be quite normal for a woman who is experiencing pain to demonstrate fluid in her pelvis on ultrasound. It was not a ruptured cyst that was producing that fluid, it was in fact her undiagnosed endometriosis.

If a woman is having pain that is due to a cyst, the cyst will be usually felt on pelvic exam and will always be seen on ultrasound. You cannot blame pain on a "ruptured" cyst if you are basing that assumption on the presence of fluid seen on ultrasound.

One of the most important initial decisions that must be made in treating Endometriosis is whether or not the woman is interested in having a baby at the time she is initially seen for therapy. That is a whole topic in itself and will be discussed later.

If a woman with Endometriosis is not interested in conceiving immediately , but will wish to have a child someday, hormonal suppression is principal mode of therapy.

Obviously, the woman will have undergone a diagnostic laparoscopy to establish the diagnosis of Endometriosis. At the time of the laparoscopy, an attempt will be made to treat the Endometriosis that is visible and also carry out other procedures that will attempt to relieve pelvic pain. LASER laparoscopy, when carried out in this way, can have a significant ameliorative effect on the Endometriosis. However, following this hormonal suppression is mandatory to keep the Endometriosis from recurring or to slow down the rate of recurrence. For some women, such hormonal therapy is initially carried out by the use of a low dose oral contraceptive. Other types of hormonal therapy such as Provera are occasionally employed.

Danazol (Danocrine) therapy may be used to initially suppress the Endometriosis. However, because of the side effects and potential risks of Danazol, long term suppressive therapy is usually not desirable. However, it is important to keep in mind that Danazol is still a valuable drug for the treatment of Endometriosis because it has the unique property of being an immune suppressant. Since Endometriosis is, in part, an immune disease, this fact makes it an effective drug when others have failed.

There are now available for the treatment of Endometriosis drugs which represent the best hormonal therapy possible at this time. These drugs are analogs (first cousins) of Gonadotropin Releasing Hormone - (GnRH) - the hormone produced in the brain which controls the Reproductive Endocrine system and ultimately ovulation. By the use of the GnRH analogs, it is possible to completely suppress the pituitary gland and thereby completely suppress the ovary. This produces a pharmacologically induced menopause which then causes significant regression of the Endometriosis. However, this menopausal state, with very low estrogen levels, creates all the problems associated with menopause. Annoying side effects such as hot flashes, mood swings, insomnia, vaginal dryness, etc. are not uncommon. Hot flashes are almost universal.

Menopause is also associated with potentially serious problems such as loss of bone mass leading to osteoporosis and changes in cholesterol which may lead to an increased risk of heart disease. Women who are taking one of the GnRH analogs alone will often develop a measurable bone loss after 6 months of therapy.

When a woman undergoes a natural menopause at age 50 or so, or undergoes a surgical menopause with removal of the ovaries, she will usually be put on Hormone Replacement Therapy (HRT). Properly administered HRT will eliminate the hot flashes; maintain adequate vaginal lubrication; prevent osteoporosis; reduce the risk of heart attack; reduce the risk of uterine cancer; reduce the risk of colon cancer; and allow that woman to live a healthier life compared to women who do not take HRT.

It occurred to me and others that combining HRT with GnRH therapy allows us to eliminate or substantially reduce the problems associated with GnRH therapy alone. Since I give HRT to women following natural or surgical menopause, why not give it to women with a drug-induced menopause?

Although this approach is still officially "experimental" (i.e. not FDA approved), there is good data available to indicate that it is safe and effective. Recent studies have shown that bone mass is preserved and osteoporosis does not develop. We have known for a long time that HRT helps prevent changes in cholesterol. I have had women on GnRH/HRT therapy for 5 years or more and they have done extremely well.

The reason for this discussion is that GnRH/HRT therapy is currently the best long term treatment available for Endometriosis. Many women experience complete (or near-complete) relief of symptoms with this regimen when nothing else had worked. I am not aware of any long term risks associated with GnRH itself. The risks of GnRH are those created by the low estrogen levels. Since we maintain post-menopausal women on HRT for many, many years, there is no reason why we should not be able to do the same for women on GnRH. Women undertaking this therapy for an extended time must understand that it is officially experimental, but there is no reason to believe it is not safe. It will remain "experimental" because no drug company will invest the many millions of dollars necessary to prove its effectiveness since so many people are already using it.

What is the biggest obstacle to a woman being treated in this manner? - her insurance company's refusal to pay for it. I had a young woman in my practice who had previously undergone a laparoscopy. She was told she had a normal pelvis. Shortly thereafter, she came to me with classic symptoms of Endometriosis. I had to carry out a repeat laparoscopy where obvious Endometriosis was seen.

Because other therapies had been tried and failed, I started this woman on GnRH with HRT and in a fairly short period of time, she was pain free.

This woman's employer then switched her insurance to a large local HMO. I was called by a physician employed by this HMO and I was told that since the GnRH therapy had exceeded the 6 months approved by the FDA, they (the HMO) would no longer pay for it. I asked how I was supposed to treat my patient and no answer was given. I was told that if this woman's pain returned, they would reconsider allowing her to go back on the GnRH! I wonder how much of a role the fact that these drugs cost approximately $400 per month played in the HMO's decision?

When her pain came back, as it usually does, GnRH was restarted. Unfortunately, as is often the case, the degree of pain relief was not as good the second time around as it had initially been. Had the HMO cared more about her welfare than their bottom line, this woman would have been kept pain free.

Unfortunately, I see this as the future of medicine under the health care "reforms" being put in place by the insurance companies. As bad as the "health care reforms" proposed by President Clinton in his first term were, their defeat sent a very clear message to the insurance industry. The HMO's and other managed care organizations recognized that they could screw the American public anyway they wanted and Congress would not get in their way. We are now paying a heavy price for this. The recent law mandating 48 hours of hospital care following delivery is a direct result of this. Babies were literally dying and it became such a scandal, Congress could no longer ignore it. Now, by law, women are allowed to stay for 48 hours. Stay tuned for the next chapter.

Therapy of the woman who is trying to conceive is a totally different matter. Part of the problem in treating Endometriosis in the infertile woman is the fact that we really don't understand how, particularly in the earlier stages of Endometriosis, the disease affects a woman's fertility. There is a great deal of data that does address this but to include it in this pamphlet would overwhelm you with so much information that I fear the major message would be lost. As I have already pointed out, it makes much more sense and provides a much better understanding if the woman's Endometriosis is considered to be the result of or coincidental to her infertility and not the cause. This is true in the case of early stage Endometriosis but not more advanced disease.

For reasons that are completely unknown, some women's Endometriosis progresses to a more advanced stage in which case it is obviously affecting her fertility by the scar tissue that it produces around the tubes and ovaries or the large ovarian Endometriosis cysts seen in the more advanced stages of the disease. In many of these cases, hereditary factors play a role. Endometriosis definitely runs in families and when it does so, it tends to occur earlier and become more severe more quickly than when it pops up randomly.

For those women who develop progressive Endometriosis, it is also now becoming apparent that they can be divided into two categories. Those with "upper pelvic disease" - tubes and ovaries - and those with "lower pelvic disease" - those women who develop deeply invasive Endometriosis in the cul-de-sac.

Upper pelvic disease is associated with ovarian Endometriosis, adhesions and infertility.

Lower pelvic disease is associated with pelvic pain and dyspareunia. However, these women tend not to have as much tubal and ovarian adhesions and it is less associated with infertility.

This concept fits nicely into the observed fact concerning the association of Endometriosis with infertility. It is obvious when a woman has large ovarian endometriomas or severe tubal and ovarian adhesions as to why she is not conceiving.

These facts provide us with a simple explanation as to the relationship between early superficial Endometriosis and infertility, namely that there is no "cause and effect" relationship although there is unquestionably an association. This is why women with early Endometriosis are classified in the same way as women with "unexplained" infertility. The presence of early Endometriosis does not explain their infertility.

Endometriosis is "staged" or classified as being either minimal, mild, moderate or severe. This classification scheme is based strictly on the amount of Endometriosis present and the damage it has produced - not the symptoms. Further more, the classification is designed to help treat the infertile woman - it is not a classification for pain and it really doesn't do that good a job for the actual amount of Endometriosis present. A woman with a painless, solitary large endometrioma (Endometriosis cyst) in an ovary will be classified as "moderate" while a woman with extensive amounts of superficial peritoneal disease causing severe pain will be classified as "minimal". It has been well known for many years that there is no correlation between the amount of Endometriosis that a woman might have and the physical symptoms it is producing. It is not rare to see a woman with minimal Endometriosis to have severe pain and yet women with severe Endometriosis may have no pain at all!

It is important to always remember that many studies have shown that treating minimal and most mild Endometriosis has no benefit for an infertile woman. If infertile women with minimal Endometriosis are divided into two groups, all other infertility factors corrected to the greatest degree possible, and then women in one group have their Endometriosis treated directly whereas the Endometriosis in the other group is not treated at all, at the end of two years, the pregnancy rates in the two groups are the same. However, it is important to remember that the pregnancy rate will still be less than the general population. Therefore, there is no reason to treat minimal or mild Endometriosis with long term hormonal suppression. However, it is important to keep in mind that there is a therapeutic effect from a diagnostic laparoscopy itself which the woman will undoubtedly have undergone.

The advent of the LASER laparoscope has changed this. If a woman undergoes diagnostic laparoscopy and minimal or mild Endometriosis is found, most physicians are now treating the Endometriosis they see with the LASER although bi-polar cautery is also effective for those physicians not able to use a LASER. Whether this will prove to enhance these women's fertility will take several years to determine. Some preliminary studies show an increased pregnancy rate following LASER ablation of minimal Endometriosis - other studies show no difference.

One study from Montreal did show that in infertile couples where the wife's minimal Endometriosis was the only detectable abnormality, treating the Endometriosis by LASER laparoscopy did shorten the interval it took to achieve a pregnancy. However, the overall rate of conception was not increased.

Newer studies have also shown that for the infertile woman, surgical therapy of her Endometriosis is the only treatment that will improve her chances of become pregnant. Hormonal suppression of her disease (no matter which drug is used) does not increase her of conception.

The LASER laparoscope has also revolutionized the treatment of moderate Endometriosis. Formerly, women with moderate Endometriosis were deemed to have sufficiently severe pathology to justify major open surgery. However, the overwhelming majority of women with moderate Endometriosis can have it effectively treated by the LASER laparoscope and these women should benefit greatly from this approach in that they will be spared the need to undergo major open surgery or other therapies.

At one time it was proposed that Danazol therapy alone was sufficient therapy for Endometriosis in the infertile woman. The statistics now quite clearly show that Danazol therapy is only adjunctive and the vast majority of reproductive surgeons, including myself, feel quite strongly that Endometriosis is primarily a surgical disease. It is all very nice when medical therapy helps. However, surgery remains the most important therapy. More importantly, statistics that have been reported following treatment of early Endometriosis with LASER laparoscopy indicate pregnancy rates that are as good, if not better, than those formerly achieved by either Danazol or major open surgery. Furthermore, LASER surgery is a "one-shot" thing and the overall time necessary to treat the Endometriosis is significantly lessened.

There is no justification to put an infertile woman with early stage (Minimal or Mild) Endometriosis on hormonal suppression. It wastes time and does not improve her chances of conceiving.

The use of the LASER laparoscope and related pelviscopic surgical procedures was heralded with great optimism. There is no question that a LASER laparoscopy has permitted many women to avoid major surgery.

The advent of LASER laparoscopy and related surgical techniques is revolutionizing surgery, not only GYN surgery but general surgery as well. Appendectomies, gall bladder surgery, hernia repairs, etc. are all being done by laparoscopy. As a result, patients are able to spend less time in the hospital and the recovery time is less.

Newer techniques in GYN surgery such as a Laparoscopically Assisted Vaginal Hysterectomy (LAVH), a Laparoscopic Supracervical Hysterectomy (LSH), or a Laparoscopically Assisted Supracervical Hysterectomy (LASH) also allow women to undergo surgical procedures with less time in the hospital and shorter recuperation times. Newer techniques also permit the treatment of problems such as tubal pregnancies and ovarian cysts by much less invasive routes with overall benefit to the patient.

Therefore, as this pamphlet is being revised (March, 2002) the best therapy for Endometriosis for the infertile woman is as follows. If the woman's Endometriosis is minimal, LASER laparoscopy will be carried out. This will often relieve symptoms and enhance the woman's fertility.

For mild Endometriosis, LASER laparoscopy will also be sufficient therapy. In almost all instances, the Endometriosis can be treated "completely" by the LASER laparoscope. For the infertile woman, no other therapy for her Endometriosis is needed.

For most cases of moderate and occasional cases of severe Endometriosis, LASER laparoscopy is also effective and sufficient therapy. However, the LASER laparoscope is not a magic cure-all. There will still be some women whose Endometriosis is not completely treatable by a single LASER laparoscopy. In these women, GnRH suppression followed by open surgery will be necessary.

In some instances, LASER laparoscopy, followed by hormonal suppression, followed by repeat LASER laparoscopy is a better alternative for the more advanced stages of Endometriosis. Having two laparoscopies several months apart is actually less burdensome and better tolerated than one open abdominal surgery. The pregnancy rates with LASER laparoscopy are as good if not better than with open surgery.

Open surgery should be reserved for those women with severe disease and severe pain that cannot be treated by less invasive surgery. Women with severe bowel involvement will also require open surgery. Some are claiming that they can do bowel surgery through the laparoscope. They can, but it takes them 7 hours to do it. Subjecting a woman to a 7 hour surgical procedure when the same result could be obtained in a much shorter period of time by other means does not serve the best interests of the patient.

Adhesion formation is also significantly less with laparoscopic surgery than with open surgery. However, contrary to popular belief, adhesions are not totally eliminated by the use of a LASER. In fact, adhesions are more related to whether the surgery is done "open" or by laparoscopy rather than whether a LASER is used. Open surgery results in far more adhesion formation than if the same procedure is done through the laparoscope.

Reformation of adhesions is a problem after any surgery, whether or not a LASER is used, whether or not Interceed is used, etc. The more severe the adhesions at the time of the initial surgery, the more severe will be the reformation of the adhesions. For this reason, any woman undergoing any type of Endometriosis, infertility, or related surgery by open abdominal surgery should have a "second-look laparoscopy" performed 6-8 weeks after the initial operation. More recent data and my own personal experience also indicates that women undergoing LASER laparoscopy who are found to have significant adhesions from whatever cause should also undergo a second-look laparoscopy. This would include women with either moderate or severe Endometriosis. Minimal or mild cases of Endometriosis do not usually require second look surgery.

One other factor must also be mentioned when discussing the treatment of Endometriosis in the infertile woman and that is the duration of her infertility. The success rate in terms of that woman conceiving depends perhaps more than anything else on how long she has been trying to conceive before her Endometriosis was diagnosed. If she has been trying to conceive for more than 3 years, her ultimate chance of becoming pregnant will be significantly reduced regardless of how severe (or how mild) her Endometriosis is. It is for this reason that I am very aggressive in diagnosing and treating Endometriosis.

The age of the infertile woman also must be considered. In women with Endometriosis as with other infertility problems, the older she is, the less likely she will be to conceive.

Another important factor in assessing the infertile couple in whom the wife has proven Endometriosis is the status of her husband (or partner). Regardless of what else is done, if a woman with Endometriosis is infertile and her husband's semen quality is "subfertile", the overall success in terms of achieving a pregnancy is half the rate of those couples where the husband's "fertility" is normal.

In summary, it is my current opinion that the following plan of treatment represents the best approach to the woman with known or suspected Endometriosis. It takes into consideration all that is now known and that which is believed to be true about Endometriosis and Endometriosis-related infertility. It is also based on the fact that women who are infertile and who are found to have the earlier stages of Endometriosis will usually have long standing infertility.

As an initial step, a diagnostic laparoscopy is carried out. This establishes the diagnosis definitively and permits proper staging of the disease. It also permits me to determine if any other significant pelvic problems are present. Women with Endometriosis frequently have other associated pelvic pathology.

Endometriosis is currently classified by the American Fertility Society as being either "minimal", "mild", "moderate" or "severe". For a woman with minimal and mild disease, satisfactory treatment of the Endometriosis by LASER laparoscopy is almost always possible. For the woman who is trying to conceive, no further therapy of her Endometriosis is necessary.

For the woman with moderate disease, in some instances, LASER laparoscopy will treat the disease effectively and no other therapy would be necessary, depending on the severity of the adhesions and other factors. Some women with moderate Endometriosis are in that stage because of a large ovarian Endometriosis cyst with little or no adhesions. For these women, a second look laparoscopy probably would not be necessary, depending on what follow-up ultrasounds show. For women with significant adhesion formation, a repeat laparoscopy would be indicated.

For the woman with severe Endometriosis ( or more advanced moderate Endometriosis), a single LASER laparoscopy will not be able to treat all her disease adequately and effectively. In such situations, hormonal suppression followed by repeat LASER laparoscopy is necessary. Open abdominal surgery is occasionally required for the most severe cases, particularly if there is significant bowel involvement.

For the woman who has had a previous open abdominal operation for Endometriosis or some other problem, it may not be possible to treat her pelvic disease by LASER laparoscopy. Again, as in the case of severe Endometriosis, open abdominal surgery may be required, particularly if a second look laparoscopy cannot adequately treat the problem.

Once the woman has gone through whatever surgical procedures are required to treat her disease to the greatest degree possible, Controlled Ovarian Hyperstimulation combined with Intra-Uterine Insemination (COH / IUI) would then be instituted.

The rationale for this approach is as follows. Based on all the available evidence and experience of Reproductive Endocrinologists, treating early Endometriosis does not increase a woman's chances of conceiving (except as noted above). Women with early Endometriosis therefore fall into the same category as couples with "unexplained infertility" or "Minimal Abnormality Infertility". In such couples, COH / IUI has been definitely shown to significantly improve pregnancy rates.

In women with more advanced Endometriosis, there is no sense wasting time to see if she could conceive on her own. She will be most "fertile" immediately after she has completed her surgical therapy. Instituting COH / IUI immediately will maximize that woman's chances of conceiving as quickly as possible.

Once a woman has completed whatever surgical therapies are appropriate followed by 6-9 good cycles of COH / IUI and has not conceived, then she has gone through all infertility therapy except for the Assisted Reproductive Technologies such as In-Vitro Fertilization (IVF) or GIFT. This approach thus allows the maximum gain in the shortest period of time without wasting a lot of effort and money on diagnostic work-ups or treatment programs of dubious value and efficacy.

The current American Society for Reproductive Medicine (ASRM) classification of Endometriosis (see attached sheet) has 4 stages for the disease - minimal, mild, moderate, and severe. You will sometimes see it classified as Stages I, II, III, and IV. There is good evidence that severe Endometriosis with a point score over 70 is a different disease, particularly in terms of infertility. Women going through IVF with early stage Endometriosis have as good a chance of become pregnant as women with other types of infertility. However, women with severe Endometriosis seem to have a lower pregnancy rate, even with IVF.

There is also evidence now that Minimal Endometriosis may be different than the more advanced stages. Genetic studies have shown that there appears to be a difference in the earliest form of the disease compared to the more advanced disease. This is in keeping with my observation that women with Minimal disease usually do not get worse as determined by laparoscopy. However, many women with the more advanced stages frequently do progress with time.

Preliminary data does suggest a way around this. A study from England showed that in women with severe Endometriosis, 6 months of GnRH suppression significantly improved the success rates with IVF. I have also had several women with severe Endometriosis conceive after prolonged GnRH therapy (without IVF). They were initially put on the drug because they were not interested in becoming pregnant when they were first treated.

This suggests that women with severe Endometriosis who are interested in becoming pregnant ought to consider prolonged GnRH therapy after surgical treatment has been completed. While this does extend the period of time during which the woman will not be able to conceive, the increased chance of becoming pregnant may be a worthwhile tradeoff.

There is some data that women with the most severe cases of Endometriosis (ASRM score over 70) have a much lower pregnancy rate than women with severe Endometriosis whose score is between 40 and 70. As a result, some physicians believe that women with the most severe cases should not even waste their time trying to conceive in the usual manner. These women should go directly into IVF.

In that best of all possible worlds, this is probably true though I have had a number of women conceive even with very severe disease. Unfortunately, we do not live in a perfect world and it is getting less perfect. More and more insurance companies are cutting back on infertility benefits - more and more infertile women will not get the care they should have.

Pennsylvania Blue Cross Blue Shield has eliminated coverage for all Assisted Reproductive Technologies, including Intra-Uterine Insemination. To be fair, a few (only a few) Personal Choice plans cover IVF. People living in New Jersey are lucky. The State of New Jersey now requires that all people covered by a plan with more than 50 members must have all infertility care paid for, even IVF.

As the insurance companies are "reforming" health care, it is getting worse. Infertility care is becoming like plastic surgery. Those who can afford it will be able to get it but it will be cash up front in the same manner as IVF. Many women, such as those with the most severe cases of Endometriosis, would be better served by IVF but are denied such care by constraints imposed by the insurance companies. I therefore urge you to write your Senators and Members of Congress and insist that whatever health care reforms are initiated include full benefits for infertility.

Even if a national health care reform program is still several years away, the insurance companies are instituting "reforms" on their own now which effectively prevent the infertile couple from receiving any care whatsoever!

In summary, it is now well established that women who have had open major pelvic surgery for any reason or LASER laparoscopy for significant pelvic disease, the likelihood of adhesion formation is very high. Second-look laparoscopy is recommended to reduce the adhesion formation, reduce pain, and hopefully, enhance fertility. There is, however, no evidence that a third laparoscopy (usually) has any beneficial effect. This approach to therapy is presented here as a general guideline. Every woman is different and I individualize therapy based upon the needs of the particular woman and her particular situation.

There is one critically important fact concerning Endometriosis that must always be kept in mind - namely that so long as a woman has at least one functioning ovary, she will continue to have Endometriosis. It may not bother her much, depending upon the therapy that she has gone through, but she cannot ever consider herself to be "cured" until all ovarian function has ceased. Even then, in a small minority of women, the Endometriosis will continue to be a problem. In rare instances, Endometriosis appears for the first time in post-menopausal women. In such circumstances, the Endometriosis is usually located in the bowel.

Endometriosis cannot be thought of as you would think of the common cold or flu, etc. It is not something that can be treated once and then ignored. It is a chronic illness that you will have for many years and decisions concerning therapy must take into consideration not only the immediate problem to be solved but the long term management as well. Even though Endometriosis is a benign disease, it shares many features of a malignancy. It persists despite therapy. It can spread to other parts of the body. It can invade normal tissues, etc. I have seen many women in my office who were told that after six months of Danazol or some other therapy their Endometriosis was cured. It is critically important that you always remember that this is not the case.

Specific thoughts and comments about LASER laparoscopy are also necessary. When LASER laparoscopy first came into common use in the late 1980's, many GYN's started doing it. Very quickly the debate started as to what was the proper technique for treating Endometriosis by LASER laparoscopy. Opinions ran from those who advocated lasering the entire pelvis (even "normal" tissues) to those who said that a LASER should never be used.

What is true is that I am seeing more and more women whose pelvic pain is not due to the Endometriosis they once had but to severe scar tissue in the pelvis created by repeated LASER laparoscopies. The rule has usually been that if a woman undergoes a laparoscopy for Endometriosis and a LASER is available in the operating room, it will be used. More importantly, if a woman has documented Endometriosis and has recurrent or persistent symptoms, she will probably undergo repeated LASER laparoscopies - especially if she has changed physicians in her pursuit of relief from pain.

However, repeated LASER laparoscopies for early Endometriosis is definitely counterproductive. A woman who is in pain after repeated LASER laparoscopies is probably in pain as a result of scar tissue created by the lasering.

I am now convinced that these repeated LASER laparoscopies, particularly if only superficial, "freckle" disease is present, cause more harm than good. This is particularly true if the physician performing the laparoscopy is too timid and only "brushes" the implants with the laser beam. This superficial lasering does not treat the disease adequately and ultimately causes more harm than good. If Endometriosis is to be treated through the laparoscope, it must be completely treated - not partially.

We also know that the natural history of Endometriosis is that it worsens by invading the deep pelvic tissues and causes dense scar tissue. Repeated lasering does the same thing. I have now seen a number women in severe pain with dense scar tissue in the pelvis but virtually no visible Endometriosis. Because of the dense scar, hysterectomy does not always relieve their pain.

One last comment about LASER laparoscopy. If you search the Internet, you will find a number of websites devoted to Endometriosis and Pelvic Pain. Keep in mind that much of what you find is incorrect and often very self-serving. It has been estimated that half of the medical information on the web is incorrect. What you will quickly find is that there is a considerable divergence of opinion as to the proper surgical technique to be used in treating Endometriosis. The important lesson to be learned is that there is no one technique that fits everyone. Furthermore, while some physicians may claim that Endometriosis should only be excised (cut out), others can show that equally good results can be obtained with either a laser or electric cautery.

I personally feel it is incorrect to lock yourself into a position from which you cannot retreat. As has been said, if your only tool is a hammer, every problem becomes a nail. There are many patients in whom I use a combination of techniques - laser, cautery, or excision. In many instances, Endometriosis in certain locations is better treated by one technique as opposed to another. I do not believe you do your patient a favor by being so locked into one philosophy or technique that you are precluded from doing what is best for that patient rather than what your reputation "demands" what you do.