Endometriosis: ignorance, politics, and "Sophie's Choice"

Endometriosis causes many physicians to shake their heads in confusion and frustration. Where does it come from? Why is it so persistent? Why is there such disagreement on how to treat it? Why are there so many opinions, and which, if any, is correct? Why does it seem impossible to cure? Questions like these should be identified for what they are: tacit evidence that a new way of thinking is needed. Instead, intellectual thought and clinical treatment of endometriosis in the last two decades have become dogmatic, rigid and demeaning to women who suffer from this disease.

Here is a common scenario reported by some important professional organisations: a young teenage patient visits her doctor complaining of pelvic pain, which is initially diagnosed as pelvic infection due to a sexually transmitted disease despite negative cultures and DNA probes. Antibiotics are given which seem to produce a temporary response until the patient wantonly becomes reinfected the following month. Antibiotics are administered again, sometimes intravenously in the hospital. Always the cure seems elusive. The patient begins to miss time from school and work and seems to have difficulty dealing with being a woman since she fears her menstrual flows and, if sexually active, fears intimacy. Painful reactions to pelvic examinations seem out of proportion and the patient is questioned about possible sexual abuse as a child despite loving parental support. Psychiatric consultation is obtained and antidepressants prescribed without success. The doctor, busy performing normal vaginal deliveries, begins to dread seeing the patient again and again, partly because all efforts have been in vain and partly because the patient has become bothersome. Expensive injections are given that put the patient into a highly symptomatic medical menopause with hopes that a decrease in pain will narrow the differential diagnosis to only six or seven different estrogen-sensitive items including adenomyosis, developing fibroids, primary dysmenorrhoea, ovulation pain, idiopathic pelvic pain, and endometriosis. When the patient does not have a lasting response, laparoscopy is performed and endometriosis is finally diagnosed. More medical therapy is prescribed with the same futile results. More surgery is carried out and collimated photons are shined at the surface of the disease, or it is sprayed with electrons. Because the disease is incurable, it soon recurs and hysterectomy and castration are recommended to the patient as the only possible solution, even though she has no children. Desperate for a normal life, the patient sadly agrees. After surgery, the patient continues to have the same pain as well as menopausal symptoms since estrogen has been withheld.

What is wrong with this picture? While this scenario may seem like an improbable fantasy, experts in treating endometriosis see hundreds of such patients in their careers, and many hundreds more with less striking versions. General gynaecologists see their share as well. The reasons for the confusion and mistakes seem so obvious, yet the solutions are difficult for ordinary gynaecologists to accept because they seem so, well, different.

The picture can be cleared up quite a bit with a combination of simple arithmetic and common sense. First the arithmetic. In America, it is estimated that at any one time there are up to 10 million women who are symptomatic with endometriosis. This number remains fairly constant year after year, with younger patients being added and older patients resolving their pain in some way and dropping out of the symptomatic group. In contrast, there are only about 34 million babies delivered each year. Thus, endometriosis outnumbers pregnancy by about 3 to 1, so perhaps in America the profession should be called Gynaecology and Obstetrics instead of the reverse nomination. Endometriosis is to gynaecology what delivering babies is to obstetrics. Despite the numerical burden of endometriosis and the tremendous negative impact it can have on patients, their families and friends, the disease gets no respect because sufferers are not identified as part of a recognised media victim group. Think about all the diseases or human states which have their own telethons, races, billboards and spokespersons testifying before government bodies: breast cancer, diabetes, AIDS, the elderly, gays, and so on. Endometriosis is more common than most of these, yet it is off the radar screen and many people have never heard of it. So one of the simplest things that will help is for gynaecologists to recognise how common it is and make endometriosis the first diagnosis in women with pelvic pain, not the last. Common sense enters the picture as well in a very simple way: there is no medicine that eradicates endometriosis. All currently approved medical therapy is based on the twin assumptions that pregnancy and menopause physically eradicate endometriosis by some undefined cytocidal effect. Yet no one ever went to the trouble to perform the simple studies that would prove that these two naturally occurring hormonal states would eradicate the disease, and these conclusions are based on observing symptoms rather than on observing the response of the disease. Medical therapy can reduce symptoms, just like pregnancy or menopause, but it does not treat the disease. Society seems increasingly angry that doctors and medicine are involved in treating symptoms instead of diseases and their causes. In this light, medical therapies are a cliché since they treat only symptoms. If the term 'treatment' is used in the sense of antibiotics treating an infection, i.e. when the treatment is finished the disease is gone, then surgery is the only treatment for endometriosis. The reluctance of practitioners to accept this truth is one of the main reasons for their frustrations, because they think that the drugs they are prescribing are treating the disease. Sadly, they tell their patients this as well.

A bigger insult to women with the disease, though, comes from the profession which is charged with caring for them. Women with endometriosis are not pregnant. Society, as well as obstetrician/gynaecologists, values pregnant women almost above all others. ?This devaluation of non-pregnant women was codified by the American College of Obstetrics and Gynecology (ACOG) in the late 1980s and early 1990s. During that time, the Resource-Based Relative Value Scale was being developed to provide a system of compensation for American physicians. The resulting values for delivering babies and performing gynaecological surgery were both low, and ACOG approached the federal government with its concerns. ACOG rightfully wanted better compensation for the physicians it represented but was concerned that if it fought for increases in compensation for both obstetric and gynaecological services, then it might not get an increase for either. In a "Sophie's Choice", ACOG chose to fight for obstetrics but not for gynaecology (Larry Griffin, personal communication). This is one of the reasons why women with endometriosis do not get the surgical care that they need. If a doctor can make two or three times more money doing a simple vaginal delivery than can be made performing surgery which may last longer than the time spent with a patient during her entire obstetric care, then the doctor will choose obstetrics. Reward response is just as active in the profession as it is elsewhere. As a result, American specialists practise gynaecology somewhat as a hobby which is subsidised by their obstetric practice. This same pattern seems to be true in the rest of the world.

The cards are stacked against women with endometriosis. It is a disease that can only be treated by surgery, but the surgery can be the most difficult in the gynaecological repertoire. Surgeons are not sufficiently well paid to do the surgery, so they have no impetus to learn. As a result, the easy path is taken. Pharmaceutical companies fund studies that paint their drugs in a favourable light, and entire generations of doctors have been swayed by these commercially driven efforts and dutifully prescribe them because that is what everyone else does and it is also easy.

Drug companies are actively working for the day when all women with pelvic pain are maintained on medicines chronically without a diagnosis or end to therapy. There may be better medical treatments in the future. However, future medical therapies will come to market under the stigma of expense and inefficacy left behind by current medical therapies. It is difficult to imagine that any hormonally based medical therapy will be highly successful knowing how different endometriosis is from normally responsive native endometrium.

Common sense again: if surgery is the only treatment for endometriosis, then it is a simple matter of choosing the most effective surgery. The most effective surgery is that which has the best chance of consistently eradicating all of the disease. The surgery that can best accomplish that end-point is excision, whether electroexcision, fibre laser excision, CO2 laser, or blunt ovarian cystectomy. This is because excision can remove both superficial and deep disease. Excision provides a pathology report which can increase our understanding of the disease and solidify the basis of scientific study.