Psycho-Social Issues for Women with Endometriosis
(I wrote this 25 yrs ago, still way too true today)
By Nancy Petersen, RN
Director, St. Charles Endometriosis Treatment Program
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 affect a cure. On these basic concepts all modern therapies have been based, including drug therapies suppressing ovarian function
What is happening to women across the North American continent and around the world, 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 %. My tracking of patients experiences at that time, matched Kate Weinstein’s data exactly. Yet literally all of our patients at that time, had biopsy proven disease despite multiple treatment failures. Sadly this continues today.
Since medical therapy does not eradicate the disease, and since laser vaporization and electrocautery have been shown to be ineffective as well, most patients with endometriosis are at risk for ineffective therapy. Patients came to Bend from around the world when multiple attempts at treatment had 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, blatantly called neurotic, 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. It could be seen that if a woman does not get the treatment she requires then she feels isolated and frustrated. BUT the more treatment a woman receives the more she begins to realize that this disease is not going to get better so this could deepen the sense of frustration and isolation as the family/support system backs away.. (catch 22)………
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. (Because there is no answer given by the doctor as to why a woman still has endo after having a total hysterectomy – after all, she was advised that the hysterectomy would get rid of it; and a doctor is unlikely to own up and say he was wrong)
If 175 million men world wide, suffered unbearable pain during sex, bowel movements, and exercise, and were offered feminizing hormones, pregnancy 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 more follow up studies to support all that we do for women with endometriosis, the least we can do is to have compassion for their pain, offer relief from it, or refer the patient to someone who can care for her whether it be surgical excision, pelvic physical therapy, or pain management.