Due to this lack of training, many OB-GYNs aren’t aware that hysterectomies aren’t an effective treatment for endometriosis. “We are taught in medical school and residency that [hysterectomy] is a ‘definitive’ treatment for endometriosis,” explains Jeffrey Arrington, MD, medical director at EndoWest and endometriosis and pelvic surgery specialist. “The idea that removing the uterus can treat a disease — that by definition, occurs outside the uterus — is ludicrous and not based on any science that I am aware of. Removing the uterus does not magically make existing endometriosis disappear.”

Dr. Lee notes that a hysterectomy can be an appropriate recommendation to a patient when accompanied by expert excision surgery on women who have had multiple failed surgeries and do not want to have any or any more children, and who might have accompanying conditions like adenomyosis (where the endometrial tissue grows within the muscle of the uterus, resulting in painful inflammation). But it should not be a first-line treatment after hormones, ibuprofen, and failed ablation surgeries with an OB-GYN who doesn’t know how to identify or remove the disease.

Secondly, ACOG — the body that oversees the more than 33,000 OB-GYNs in the U.S. — recommend standards of care that focus on palliative solutions, i.e. symptom management, but do not treat the actual disease. Hormones like the birth control pill, GnRH agonists, and NSAIDs like ibuprofen, are the first recommended line of treatment, according to ACOG. Unfortunately these only mask the disease, and science now shows that this type of hormone therapy might even worsen the condition.

Birth control can definitely be effective at symptom management for some women. It might work for a time, but it can also work and then fail, just not work at all, increase progression of the disease, or exacerbate symptoms. GnRH agonists can only be used short-term because of the side effects, including permanent bone loss. For women like Catherine, who have been suffering for years, hormones and Advil cannot undo the damage wrought. And here’s where things escalate: "If a woman has completed having children and all other conservative treatments haven't worked to stop the pain, she may consider having her uterus removed," states Tommaso Falcone, MD, of ACOG, although they do recommend preserving ovaries if possible.

So when a doctor prescribes you a hysterectomy for endometriosis, it's because they don’t know what else to do. In Dr. Lee’s words, “if you have a hammer, then everything looks like a nail.”

This situation has become so bewildering for endometriosis patients that thousands of them are now calling on the ACOG to change their guidelines focused on palliative care. Casey Berna, an endometriosis patient advocate and licensed social worker who created a petition to address these issues, says, “ACOG has a responsibility to give practitioners more tools to adequately recognize the disease, validate the patient’s pain, and then educate the patient about the disease.”

She started the petition after seeing so many patients in her practice suffer the consequences of flawed training and treatment recommendations and hearing women getting advice from their doctor that a hysterectomy and/or removal of ovaries were a cure for the disease or their only option. “There is such a fundamental difference between how ACOG views endometriosis care and how people who are working with endometriosis every day [view it].”

She advises women who have been told a hysterectomy is their only option to seek care with an excision specialist before they commit to the procedure, especially since a hysterectomy alone does not remove endometriosis effectively.