Author: Nancy Petersen
Co-founder of the first LAPEX program for the… Published Sep 21, 2022
New pelvic pain management articles suggest treatment for endometriosis is hormonal suppression. In the mainstream medical journals, seminars, and discussions it is put forth as the first treatment of choice. Since no medication treats endometriosis, how does such misinformation undergo peer review successfully? Often those developing the programs are consultants with the drug companies who market the drugs that do not work, have significant side effects that were hidden from patients and physicians alike with a court order. How does gynecology, an area of medicine that should be steeped in science stand by accepting such misinformation when the very patients in their practices report treatment failure regularly? For one thing, when we deny what the patients report to us it is much easier to accept misinformation from sources rife with conflict of interest as paid consultants for the drug companies.
Several years ago BJM called out such conflict of interest as rampant and that patients deserve better. Few paid heed to their concerns and conflict of interest still dominates.
There is little doubt that our 173,000 patients having failed all gyn has to offer are suffering. Their families, jobs, education, friendships, and social lives are all pretty much on hold. To top off the devastating impact of this disease, they are further injured by the disbelief, psychological dismissal, and denial of the need for help that they have.
Denial of care, and settling for ineffective therapies can be attributed to several things. First of all, advocates teach patients why treatments fail, and send patients looking for greater skills. Sadly, there are not enough truly skilled endo experts to deal with the volume. So education has created a demand the industry can’t yet meet. We know that gynecologists coming out of their residencies are not prepared to manage even simple diseases surgically as missing in their education have been the very basics of the disease, what the true symptoms, what it looks like, how that changes over time, where is it found and how and who can effectively remove it. So often the patient is not offered surgery, or only a partial surgery is done. In addition to exceptional skills, treating disease surgically requires a great
deal of time. It is very difficult to manage a large OB/gyn practice and spend hours in the operating room with complex diseases. A single case can take 3-5 hours. Reimbursement for that kind of commitment is dismal and makes coverage of the surgeons overhead when endo is their primary work, difficult. Ablation of endometriosis has a high failure rate but is often done as it is faster than meticulous excision of the disease. Many specialists have noted ablation may damage the surface of the lesions but is not adequate to destroy the disease completely, so relief is temporary if it occurs at all. The financial burden for some patients makes accessing expert care beyond their means. However, not all good surgeons are out of network or private so patients are encouraged to check as some surgeons are employed in large clinics, or universities, or even private clinics that do contract with insurance.
We are seeing more team approach with a variety of specialties including gyn team leaders, Uro, thoracic, gastro-intestinal, nutrition, PT, and mental health all on board to guide patients. That should be the standard. Even diagnostic laparoscopies are often done incorrectly, failing to look in the most common places of occurrence, yet again turning sick patients away as disease-free.
Additionally, endometriosis surgery requires exceptional skill, so just managing the basics above does not make folks experts in pelvic anatomy, finding and managing deep disease. It is not uncommon for a pt newly out of surgery to be told their disease is too complex. The error is it was too complex for the current providers, wisely unwilling to address thoracic disease, attempt to dig a ureter out of its scarred down bed, or remove disease from the bowel, or even manage endometriomas. Tackling a disease one is not trained to manage often leads to injury, sometimes serious, sometimes leaving patients in worse pain. Part of the issue seems to be that at least some do not understand they may not be prepared to move ahead surgically. But every day patients are taken to surgery by many of the 82% that do not know the disease, its symptoms, its appearances, its locations, and without the skill to deal with what they find. This is doomed to failure.
So too often we settle, offering drugs with long-term side effects that can impact heart, bone, and brain function. Many dismiss these concerns as insignificant. Ask the families of men who took lupron for prostatic cancer, now showing an unusual rise in the rate of dementia. But the impact of the drug on the mental function of the
millions of women who were reassured it was no big deal? No, we have not studied that, the sounds of silence. Not only are the side effects an issue, but the drugs do not treat and patients are not receiving an informed consent on both counts. And often spent a fortune on false hope.
The fact that these drugs do not treat, have not been accurately portrayed, and have serious long-term side effects that will crop up on the patient’s lifespan goes unnoticed. We rarely have patients in Nook who have been warned about cognitive injury, small vessel heart disease, or bone loss before being put on the GnRH family of drugs. Suspect that the industry will get by with it because these issues will crop up down the patient’s life span and current providers will not be learning from the impact.
Physicians could go far in recognizing treatment failures simply by asking patients about the restoration of their lives. Have they been able to return to intimacy, work, and school, are they able to participate in social events or family gatherings? Have they been able to retire their heating pad and give up their spot on the couch? As unscientific as it is, it measures the life patients want to be restored.
But settling for medical therapy won’t do it. Rather teams of physicians with inordinate skills are needed, and not just for deeply invasive disease but for all disease that causes suffering. Putting less severe cases on medical therapy is not a step in the right direction. It delays proper diagnosis and treatment and does not stop progression nor protect fertility. DIE (deeply invasive endometriosis) did not just show up one day, it got that way over time. And can be present in all age groups. Reducing inflammation with medical suppression further complicates cases in that it makes disease harder to find for the unskilled eye.
True science in medicine should not be settling, and drug companies need to be held accountable. Stop putting out “new, exciting, treatments” every time a patent is about to run out just to offer more of the same. Endometriosis is not a terminal disorder in most cases but despair can be.
Time to own up.