This article was written in response to a request for material to share with family and care providers around mental health issues in women iwth endometrisosis. It contains some ideas I have coalesced over the years. If it is not appropriate here, feel free to remove it, but if you like it can be shared. Nancy Petersen
Psycho-Social Issues for Women with Endometriosis
By Nancy Petersen, RN Retired
Past 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, none of which works or is true as we know the disease today.
What is happening to women around the world for women with endometriosis, is that large numbers who fail to fit the original paradigm 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 when managing the Endometriosis Treatment Program at St Charles Medical Center in Bend Oregon (now closed) matched Kate Weinstein’s data exactly. Yet literally all of our patients at that time, had biopsy proven, active, painful disease despite multiple treatment failures. Sadly, this disconnect between their health and our understanding of it continues today, as evidenced by the thousands of women with active disease that I interact with weekly.
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 sought excision of their disease, 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, treatment known not to work but widely used. 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. This dismissal occurred despite evidence of peritoneal signs and symptoms (acute abdominal pain, bloating, nausea, pallor, restlessness, pain with sex, rebound tenderness, faintness, low grade fevers and painful pelvic exams). That 75% of women with endometriosis are being dismissed as neurotic, would in fact generate some depression, hopelessness, and despair, simply from the level of pain, let alone the isolation, inability to conceive, inability to participate fully in life as a sexual, creative being. 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.
There is support in the literature for significant endometriosis persisting after castration. Dr. David Redwine published a series of 72 cases in the 1980’s of persistent endometriosis, some as long as 22 yrs post castration with no estrogen replacement. These cases responded dramatically to excision of their disease, confirmed by board certified pathologists. And the patients were able to return to life as active, creative, sexual, child bearing (in many cases) individuals. Since that time others have published the presence of active painful endometriosis post castration.
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 failed treatment received. It could be seen that if a woman does not get the treatment she requires then she feels isolated and frustrated. 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, depression, hopelessness, despair, and isolation as the family/support system backs away.. (catch 22)……… Families tend to put too much emphasis on what the doctor says, and when the doctor has missed the issues, and blames the patient for her condition, quickly families, spouses and friends will as well. It becomes a deep pit which no amount of counseling can remediate unless the peritoneal quality pain is alleviated.
The impact on their relationships and the quality of their lives may lack appreciation in the healthcare arena. This disconnect is huge. But when we don’t know the answer, blaming the patient is inexcusable. What women with endometriosis need, is respect for their journey, skilled surgery, compassionate care, referral for pelvic floor therapy by certified women’s health PT’s, If we cannot do the surgery, perhaps referring the patient to those with advanced skills would be the next step.
If 175 million men worldwide, 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 career’s, and they deserve our support and respect, not our psychological dismissal.
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. To deny a patient with peritoneal quality pain, relief, is to say the least, unacceptable. Endometriosis may not be a terminal disease. But despair can be.
Nancy Petersen RN Retired