Endometriosis: False Narrative Does Infinite Harm to Gynecology and Patients Alike

Currently, Nancy's Nook is approaching 62,000 members, the last 4 weeks growing at the rate of a 1000 new members a week. Patients come out of desperation having failed all gynecology has to offer them, except expert excision of their disease. Some have experienced excision failures but when we look closely those doing the surgery have not undergone any specific training. They often do not even enter the posterior pelvis, pronouncing the uterus, tubes and ovaries in pristine condition. Since those organs are the least frequently involved, this pronouncement is of little comfort to those of us teaching and advocating for patients suffering peritoneal quality pain, let alone the patients.

Sadly, they have also failed much of what was never likely to work, having been told by their gynecologists with aggressive assertion these were cures. We are quite sure that removing ovaries does not stop the progression of endometriosis since the lesions themselves provide estrogen stimulation. Yet patients commonly are told removing ovaries will cause Endo to dry up then we can provide estrogen replacement eventually. Not only does this not work, it puts patients at risk for long term risks to bone, heart, memory and other issues. Apparently, doing a oophorectomy now, pushes any concerns about these risks on down the patients life span so we do not have to consider it in the here and now, leaving the patients to deal with it on their own in the future.

Another common failed recommendation is to remove the uterus. This assumes that the uterus is the source of endometriosis. While it is an old, likely mythic assumption, it is commonly assumed. With most women experiencing some degree of retrograde menstruation, around 10% experience endometriosis. The work of Redwine and others tell us that retrograde theory is likely unsustainable as the primary source of endometriosis, it continues. Yet we see hundreds of post castration patients in substantial pain from persistent endometriosis when we refer them on to expert level care. Recently, the Mayo Clinic published a series on the adverse impact of hysterectomy alone on health that should give us pause in taking out normal uteruses. Dr. David Redwine's recent presentation at the EFA conference again laid out numerous differences between the lining of the uterus and endometriosis and others have begun to call for caution in extrapolating data from animal research on transplanted endometrium to the care of endometriosis.

Removing a normal uterus is unlikely to impact recurrence, persistence, or progression of endometriosis. The evidence suggests doing so may have negative impact on long term health of the patient. The disease itself needs a management plan, not normal organs.

Moving on to pregnancy, we find many of our members having been told pregnancy would cure their endometriosis, and if the first one does not work have another. Really? Yes, really, commonly experienced. While 65% plus or minus depending on the severity of disease can and do conceive, patients tell us that having children with peritoneal quality pain is often something they wish they had not done prior to finding relief of their infirmity, noting it is quite difficult to parent from the couch curled up with a heating pad. In fact, they often express great regret at what they have missed in their children's lives when limited with persistent pain. But based on physician recommendation that pregnancy cures they often try, some spending tens of thousands of dollars for IVF, to achieve a pregnancy as well as exposing themselves to the risks noted in the literature while pregnant with endometriosis. The disappointment in the lack of help for their disease as well as guilt for parenting struggles while in pain are commonly expressed by our patient populations.

Psychological dismissal is another biggie giving gynecology a black eye. While living with chronic peritoneal quality pain spawns some emotional maladaptation, the disease in our view comes first. Shirley Pearce a professor of gynecology in the UK wrote in a book, Psychology and Gynecological Problems her observations on chronic pelvic pain. She noted that patient with chronic pelvic pain when tested with the MMPI tool, most had abnormal profiles including some serious disorders such as psychosis, depression, schizophrenia, and other maladaptive behaviors, she also noted testing was rarely done once pain was relieved. Her review of the literature revealed even some of the more serious diagnoses were reversed once pelvic pain was relieved. Kate Weinstein in her book Living with Endometriosis noted that 75% of women with endometriosis had been dismissed as neurotic. This was consistent with my polling patients who came to our program in Bend Oregon, and yet our population of patients all had biopsy positive endometriosis at the time of surgery. Dismissing 75% of patients who present with substantial pain, later found to have active disease does not fare well for gynecology either.

Other recommendations for treatment in addition to psychiatric care, ovary removal, hysterectomy, TAH/BSO both, pregnancy, include weight loss. Not to reduce risks at surgery but simply the patients are told bluntly that they are too fat and that causes pain, some also are told they are underweight and that is the issue. I recently wrote an article on the different things patients were told as causative or contributing factors. The narrative was stunning in its disrespect for the patients status and symptoms, often blaming completely unrelated issues such as piles. Yes, piles.

Patients are commonly told that ablation and excision are equal when it comes to treatment but the reality is that going after invasive disease with ablation leaves carbon deposits on the extremely sensitive peritoneum not only fails to destroy the disease, it commonly leaves the deposits leading to confusion at future surgeries. It is quick and easy so to speak, as compared to meticulous excision of lesions taking a great deal of time and effort, let alone additional training and expertise. Another reality is reimbursement for doing good surgery is lagging, so surgeons have a dis-incentive to do good surgery, but have to set aside the high failure rate of ablation, let alone the failure to relieve symptoms. Patients commonly report that while they received temporary relief with ablation when the pain recurred it was much worse. One has to wonder what role the burning and scarring of the peritoneum plays in the worsening of their pain? But clearly, ablation has a high recurrence rate when compared to meticulous excision done by trained skillful surgeons.

Medical therapy is often presented to patients by gynecology as curative despite the lack of evidence that medication of any kind can eradicate endometriosis, nor prevent progression or recurrence. ACOG's practice bulletins indicate that medical therapy may suppress symptoms, and even reduce the number of simple cysts, yet there is no role for them in stopping progression, preventing recurrence, or eradicating disease. Yet, very commonly patients have been told this is the case. Where does this myth come from? Are we buying Big Pharma's marketing song and dance without doing the necessary investigation of medical therapy? We continue to see recommendations to treat stages 1 and 2 with medical therapy. To what end? Suppression does not stop progression so we are allowing disease to progress, risking fertility for short term symptom control? Patients regularly report worsening of their symptoms during pregnancy, nursing and medical therapy. Are we listening?

Then there is the suggestion that medical and surgical therapy have about the same outcomes, some even publish papers to that effect, often supported by Big Pharma. The glaring absence in these papers is differentiation. Differentiations are important because there is a huge difference in surgical outcomes when surgeons are FMIGS trained with a specific component on endometriosis (what is the true disease profile, what does it look like, where is it found, how do you remove it and when trained consultants are needed). Patients come all of the time to nook saying their excision failed. When you look at the surgeons preparation for endometriosis surgery specifically, most of the time it is missing. Often patients tell us their surgery was done by an oncologist but failed. That is not a surprise to us, oncology and endometriosis surgeries require different skill sets. Good endometriosis surgery is about as complex as brain surgery and they need almost as much training.

There are numerous other myths used in working with endometriosis patients that are doomed to failure, I have only included the most obvious here. Gynecology is going to have to shift into high gear as more and more patients become educated on the true nature of this disease and the most effective approaches in order to maintain or in some cases regain credibility because what is being pushed off on patients now is often very suspect. Whether it is preferred or not, patient involvement in their own care is growing, and health care must keep abreast of the trend, and bring more current information and leading edge skills into the management of patients and above all else we must learn to listen to patients. The one trend that is commonly expressed by our 62,000 patients is no one listened to me, they were so busy denying my experience. When we refer these patients on to greater skill, they commonly report that they were listened too, their symptoms were not minimized nor set aside as unrelated. (Dr. Marc Possover in his work in Neuropelveology has shown a much wider symptom profile in endometriosis patients in part due to its impact on the nervous system often beyond the pelvis. Time for gynecology to catch up with the patients actual experiences)

One of the more encouraging things, currently, is the Society for Gynecological Surgeons conference this week and their emphasis on quality, leading edge information, and patient involvement and the need for gynecology to stay or get in tune with patients needs. Their continued emphasis on listening is particularly welcome to see along with others such as AAGL and individual surgeons who have been pushing for standards for years. The more who join forces the more likely we are to make progress.