I have been doing lots of research recently and found this post by Dr Jeff Arrington, an endo specialist in America. I found it really helpful, so I thought I would share as I'm sure like me, there are many women here trying to figure out what to do...
THE STANDARD OF CARE IS NOT SUFFICIENT!!
There has been a lot of "chatter" on Endometriosis social media pages lately about hormone therapy to prevent endometriosis from progressing as well as "chatter" regarding hysterectomy to "treat" endometriosis.
Given that most patients only know what they are told by their gynecologist, I'd like to break down the one publication that general gynecologists refer to to "educate themselves."
The ACOG Practice Bulletin #114 on Endometriosis, covers a wide variety of topics in a "politically correct" way. Most of the studies they use to make their observations focus only on management of endometriosis related pain (for hormone therapies), and reoperation rates and pain for surgical treatment.
A short reiteration on hormone therapy. Any medical therapy for Endometriosis is meant to help with pain. This is called "palliation." The purpose of hormone therapies is the same as that for pain medications and anti-inflammatory medications. There are no data to suggest that medications prevent progression of endometriosis. As endometriosis surgeons, we often see patients who have had ok pain control on medication, yet present with advanced, stage 4, fertility stealing endometriosis. This clarification is often overlooked by gynecologists as they read though the ACOG Bulletin. They teach patients that GNRH agonist therapy after incomplete endometriosis surgery will "get rid of" or "kill off" any remaining disease. This is simply NOT TRUE!
Gynecologists also often quote hysterectomy with removal of the ovaries to be "definitive treatment for endometriosis. The general understanding of a "definitive" treatment is that it completely takes care of the problem so it does not keep troubling the patient. This attitude is severely misleading and untrue.
The ACOG Bulletin also has a section on this that is overlooked or misunderstood. They quote the reoperation rate of around 15% after hysterectomy and castration for endometriosis patients. Interestingly they also state that it is unclear in the studies if the endometriosis was removed at the time of hysterectomy. In studies where Endometriosis is completely removed at the time of hysterectomy, there is no benefit to castration or removal of both ovaries if they are unaffected by endo. (This part is correct).
Interestingly, the rate of reoperation after hysterectomy and castration of 15%, is close to the accepted percentage of patients with deeply infiltrating endometriosis or D.I.E.
Hysterectomy and removal of ovaries DOES NOT TREAT Endometriosis unless there is endo growing on those organs. If hysterectomy is performed and the endometriosis left behind, this is considered incomplete surgery. In fact this practice does go against ACOG recommendations in the bulletin. The bulletin states that hysterectomy can be helpful at the time of surgical treatment for endometriosis. In other words, the removal of endometriosis should be the primary focus of the surgery and hysterectomy may be considered additionally for uterine related pain symptoms. The most common of these would be endometriosis of the uterus or cervix or adenomyosis.
General gynecologists have taken the Bulletin statement to mean that hysterectomy alone is "definitive" treatment for endometriosis. His harms patients in a few ways. First they continue in pain that severely affects their lives. On top of this, they are often told that the pain cannot be from endometriosis as they have had a hysterectomy. This teaching continues the cycle of patients believing they are "crazy" or that there is no hope. Other therapies such as pelvic physical therapy or psychiatric, or pain management referrals are then pushed on the patient so the gynecologist can "wash his/her hands" of the problem. Please don't get me wrong, those other treatments do have a role in the appropriate patient. Especially physical therapy. But, as long as there is Endometriosis that is provoking a pain response, I believe that the benefit from pelvic PT has limited benefit. This attitude also puts patients at risk of opioid dependency.
Gynecologists are terribly "mis-educated" about endometriosis treatment. This largely lies on the inadequate surgical education we receive. General gynecologists simply do not leave residency with the skill to identify and remove Endometriosis in all its presentations and locations. When met with disease that they can't treat, they run to the only "treatment" they have been trained to provide, hysterectomy and castration. Most of them have not reviewed any literature or received any education in Endometriosis management since leaving residency. Their knowledge is old and based on studies that used incomplete surgery as the benchmark for comparison.
Few general gynecologist "want" to treat patients with endo, yet they also do not want to "lose their patient." Whether it is outdated education, worry about losing patients, or pride, many gynecologists simply will not admit when Endometriosis is beyond their capability of treating.
This disease is, by far, the most difficult surgical treatment we see in benign gynecology. This is often worse disease and more difficult surgery than gynecologic cancer. It takes tremendous time and experience to be able to recognize all forms of disease and not "freak out" when confronted with stage 4 endo with frozen pelvis, obliterated culdesac, and DIE.
It truly is time that we must recognize that the "standard of care" for endometriosis is not sufficient. There is a proven better way to treat this disease. As patients better educate themselves and gynecologists learn about the disease and stop their selective bias reading of literature, we may begin to speed the progress.