Endometriosis: Time for the old guard to step away, Universities, ACOG, and others.
By Nancy Petersen, RN
Editor’s Note: This expert opinion is 100% fact.
Right now, little care offered in endometriosis to patients has anything to do with finding relief for patients. Instead, we are protecting those who try to treat endometriosis however ineffectively. The old guard is defined at University Professors and gynecology to treat endometriosis using myth based rumor rather than science.
We see every day in our 40,000 member education group (continuing to grow at a rate of 400–500 a week after failing all gynecology has to offer) patients told to have a hysterectomy, have a baby, let me take your ovaries out and we will cure your endometriosis. Don’t want to do that? Fine, let me shut down your ovaries with medical suppression, never mind that the side effects of Lupron (and other similar) were never fully revealed and if you lose your ovarian function permanently well, never mind acceptable losses. Oh ok, well, let’s stop your endometriosis with birth control, we will keep it from progressing or returning, never mind that ACOG’s own practice bulletins call in to question that this would even work. Just accept the abnormal hormonal state, and risk of stroke, heart attack blood clots, again acceptable losses. Oh, didn’t work? Let me find you a psychiatrist.
Every day patients are told to have a hysterectomy to treat their endometriosis by the very caregivers who should know better. The hysterectomy more often than not is recommended via a laparotomy as opposed to laparoscopy. Well, if the doctor has not had a MIGS fellowship or training then he or she does not have the skill to do it laparoscopically. Never mind that a laparotomy is far more likely to have a longer recovery, greater pain, and cost more, but the reimbursement to the surgeon is much better. Wait, we are making decisions based on how well the surgeon is paid? We are, let alone that a hysterectomy does not treat endometriosis. And 600,000 hysterectomies are done in the US alone annually, a good many of them are elective for the wrong reasons.
Moving on to pregnancy, aha yes, back to those old rumors from Sampson et al, just have a baby and all of your troubles will be over. If you can get pregnant, then you are faced with all of the risks associated with endometriosis and pregnancy. Don’t take it from me, look it up, not just google it, but try the Library of Medicine. Higher rates of miscarriage, placenta previa, premature birth, and organ complication during pregnancy exist, but oh, ignore those just tell her to get pregnant. Just this week another case report of a ruptured bowel during pregnancy in a stage 4 endometriosis patient should be getting our attention. But no.
And when and the baby arrives, we now have a bundle of joy demanding love and attention 24/7 from someone who cannot get off the couch or away from their heating pad. Good luck with bonding with the new baby. I do not speak of this lightly, our members in Nook have clearly identified regrets after having one baby or more and were not well enough to participate in their children’s lives. No bonding, no school activity, no family vacations, as peritoneal quality pain drives everything.
Drug therapies abound, yet do not work, don’t take my word for it, review ACOG’s practice bulletins. ACOG in their infinite wisdom has chosen to ignore activists pointing out their shortcomings. Not interested in improving outcomes for patients with endometriosis, their efforts go to holding on to the status quo, protect the income generated thru one inefficient therapy after another, one useless surgery after another, one organ removal or laser ablation after another. When all therapies have failed we always have the psychological dismissal to lean on. In my experience, 75% of our early patients had been dismissed as neurotic, yet all (read 100%) had board certified active endometriosis once removed and submitted for study. Then there are the newer trends of blaming central sensitization for pain, but without removing causative factors no treatment is likely to be effective.
There is no question a role exists for drug therapy to care for severe dysmenorrhea and dysfunctional bleeding where conception remains a goal. I am not addressing that here. As well some use is recommended for ovarian cysts not treated by excision of endo elsewhere.
The old guard in the field, in the professional organizations and in the universities need to step aside, step down, walk away or modernize. The problem is the good old boy network (also trains the women in the same mold) is outdated, lost, unable to adapt. Treading water in myth based treatments leave lives on hold, disease unresolved, careers destroyed, relationships in tatters, and patients in despair, unacknowledged and untreated. They perpetuate the ineffective status quo. Typical of their disregard is the floral display of a vagina and clitoris at the ACOG annual meetings, not only thought to be humorous but is inappropriate and smutty. That sort of superficial acknowledgment of women is part of the problem.
The old guard and new poorly qualified leadership (where it exists) believe that disease can be left and it will dry up, or that less complex disease can be treated with drug therapy (not true) or if the disease cannot be seen with scanning it does not exist or is not important. Those patients when put into competent hands, get relief of their disease when it is properly and completely removed. One has to ask why leave disease at all? Are we beholding to powerful money interests? Are we unwilling to learn what we need to know to do competent surgery? To evaluate other pelvic pain generators and get treatment going for them? Are we just protecting our income sources? (one ineffective surgery/procedure after another, leading to an eventual hysterectomy, oophorectomy leading to persistent pain and psychological dismissal?) And when we can get them into competent hands, more often than is believed endometriosis is present and responds to competent surgery. Misogyny abounds, patients deserve better, its time for new leadership, leaders who get it and stop plugging up the road of progress with mythic stumbling blocks, income protection chaff.
AAGL and others advocate leaving healthy organs alone, do not remove healthy ovaries, do not remove healthy uteruses, there is nothing to be gained, except personal physician income. AAGL and other laparoscopic groups are now advocating that laparotomies should not be routinely done to treat anything, skills need to be improved so that all appropriate patients have access to MIGS or minimally invasive gynecological surgery. The old guard needs to step up and realize they are failing patients badly.
The old guard in universities, too, need to step aside, they hold the key to the future and right now the future is more of the same lost steps that have guided the last 100 years. 40 years ago, David Redwine, MD noted he got a 15-minute lecture on endometriosis, Last year John Dulemba MD noted at his university address:
John F. Dulemba, MD — Endometriosis Pelvic Pain
May 13, 2017, ·
“At the University of Pennsylvania for my 35th medical school reunion. I talked to 2 first year med students yesterday. They just had a lecture on endometriosis. 1 slide. At the bottom, it said 10% of women have it. He was wondering why a bacterium that affects maybe 70 people per year gets a 2-day lecture, but 1 slide for endometriosis. Ugh. Then we wonder why patients don’t get the treatment they need. We had a long talk about endometriosis. Lol. I think they wanted to run away by the time I was done. Often I am asked the question about why endometriosis is either ignored, or the Doctors do not understand the disease. This is an explanation of why that happens. What is the solution? That is a difficult task. When the professors and experts in the prestigious Medical Centers do not disseminate valuable and current information, how are the doctors in local communities going to be educated? Patients are the only ones that will push for this disease to be treated properly. Keep PUSHING everyone!!!”
Hello folks, nothing has changed, protecting the status quo is about protecting the bottom line and not about better patient care or learning what you need to know to manage endometriosis well. No one graduates from an OB/GYN residency prepared to treat endometriosis but someone forgot to tell the new graduates that.
“Harm comes when medical organizations fail to make policies that will benefit patients because it will not benefit them” Casey Berna
Give us professors/teachers who understand modern concepts, who know what endo looks like, where it is found and how to remove it. Give us professors /teachers who will mentor new young surgeons in endometriosis care. Give us professors/teachers who understand multiple pelvic pain generators and will begin to develop treatment plans to address them all. IC, PFD, Adenomyosis, PCOS, endometriomas, all need attention. Give us professors/teachers who respect the journey these patients are on and will not dismiss their complaints simply because the physician does not know how to effectively treat. Give us professors/teachers who will revamp medical school curricula to truly reflect what endometriosis needs in the here and now. Stop waiting for esoteric ineffective research that has nothing to do with the real needs patients have. Excision works, but it has to be done expertly and for many, it is one step in pelvic pain management. Give us treatment centers for all disease, stop leaving less complex disease because someone thought it was unimportant. We know for sure even minor peritoneal disease can cause unbearable pain.
Endometriosis may not be a terminal disease but despair can be. We need leaders who will lead us to expert endometriosis care. Please, lead, follow or get out of the way.
First Published on March 4, 2018. To link to the original story https://www.linkedin.com/pulse/endometriosis-time-old-guard-step-away-universities-acog-petersen
