This article first appeared in "Women's Health Forum," an interdisciplinary newsletter for physicians and medical students. Reprinted with permission. A free sample of this newsletter may be obtained by writing: Editor - Charlea Massion, MD., 6113 Abbey Road, Apros, CA 95003. In the early 1920's Sampson and others told us that women with endometriosis were infertile and that the primary pain symptom was dysmenorrhea. It was further asserted that the most frequently involved areas were the ovaries, and that the lesions were black, and/or brown. The original concepts further told us that pregnancy, menopause, or surgical castration would effect a cure. On these basic concepts all modern therapies have been based, including drug therapies suppressing ovarian function.

Modern concepts tell us that the appearance of endometriosis is usually not the "textbook" picture until the patient reaches her early thirties, that the true symptoms of endometriosis are pain at mid to late cycle, pain with exercise, pain with sexual intercourse, etc., and that the ovaries are infrequently involved. Further, since endo lacks normal populations of hormone receptors, it doesn't respond to drug therapy as we would have predicted.

The direct results of this are that it is possible for the patient to have as much of 70% of their disease unrecognized at surgery and left as a continued source of pain, or to be treated with expensive drugs which do not eradicate the disease.

What is happening to women across the North American continent is that large numbers who fail to fit the original paradigm of endometriosis are undergoing psychological dismissal. This dismissal is very damaging in that they become isolated from their families, partners and the health care system. This dismissal is reported by Kate Weinstein in her book, Living with Endometriosis, to be as high as 75%.

Since medical therapy does not eradicate the disease, and since laser vaporization and electrocautery have not been validated by follow-up study, most patients with endometriosis are at risk for ineffective therapy. Patients come to Bend from around the world when multiple attempts at treatment have resulted in failure. Their stories illustrate that their dismissal is real, and can come from female as well as from male physicians.

They report being referred for counseling, psychiatric care, or just being ignored since they have not responded to treatment. As those around them begin to see the dichotomy between what the health care provider believes and what the patient is experiencing, considerable confusion develops.

Too often there is abandonment of the patient by her crucial support system and she grows more and more isolated. The degree of isolation and frustration is proportioned to the degree of treatment received.

Patients with previous TAH, BSO are frequently the most frustrated, since many have traded their pelvic organs for unsuccessful treatment of their disease. Continuation of symptoms is predictable, since "definitive" surgical treatment of endometriosis by TAH, BSO involves removing largely unaffected organs and leaving the disease in place.

The serious harm that is done to women through psychological dismissal should give us reason to consider carefully what we say to them when we are uncertain of a diagnosis. In Chapter 6 of the book Psychology and Gynecological Problems, "Chronic Pelvic Pain," the authors review the studies that have been done on women with pelvic pain and their psychological profiles. Most studies indicate that profiles will be abnormal as measured by the MMPI. Only one study could be found that looked at MMPI's once the woman was free of her pelvic pain. This study reported that women who have become relieved of their pelvic pain and who had exhibited neurosis, psychosis, and schizophrenia prior to pain relief, tested normal or near normal. In spite of having the courage to seek many differing opinions, the patients we see doubt themselves and are often moved to tears when they are confirmed to have pelvic pathology. Often, the first question they ask on awakening in the recovery room is,"Did I have endometriosis?"

The impact on their relationships and the quality of their lives may lack appreciation in the healthcare arena. In the presence of pelvic endometriosis, these women often exhibit abdominal bloating, abdominal pain, pale skin, faintness, restlessness, and sometimes low grade fevers. These symptoms in other patients would garner healthy respect by most physicians. In women with endometriosis, doctors are somehow able to excuse the presence of such symptoms and their denial grows more profound once the woman has been castrated for treatment.

If five million men suffered unbearable pain during sex, bowel movements, and exercise, and were offered feminizing hormones or surgical castration as treatment, our attitudes would be quite different. Women with endometriosis struggle with life altering pain, less than supportive attitudes by far too many healthcare providers, try to maintain relationships, family and careers, and they deserve our support and respect. Until there is widespread agreement on the nature of this disease, the best outcome based therapies, and follow up studies to support all that we do for women with endometriosis, these women do not deserve the psychological dismissal many of them get.

REFERENCES

• Redwine, DB, Age related evolution in color appearance of endometriosis, Fertility and Sterility,Vol. 48:1062, 1987.
• Stripling, MC, Martin, DC, Subtle appearance of endometriosis, Fertility and Sterility,Vol. 49:427-8, 1988.
• Andrews WC, Larsen, GD, Endometriosis: treatment with hormonal pseudopregnancy and/or reoperation, American Journal of Obstetrics and Gynecology, 118:643, 1974; and Punnonen R, Klemi P, Nikkanen, V, Recurrent endometriosis, Gynecol Obstet Invest 11:307, 1980.
• Stengold, KA, et al., Treatment of endometriosis with a long acting GNRH agonist, Obstetrics and Gynecology, Vol. 69:403, 1987.
• Weinstein, Kate, Living with endometriosis, Women's Health Testimony to the National Institutes of Health task force on opportunities for research, Oregon Endometriosis Institute, Debra Redwine.
• Pearce, S, Psychology and gynecological problems, Chronic pelvic pain, Chapter 6. Tavistock, 1984.
• Pearce, S, Psychology and gynecological problems, Chronic pelvic pain, Chapter 6. Tavistock, 1984.