Why the new endometriosis guidelines frustrate advocates, doctors

Casey Berna has spent years working to improve endometriosis care. 

She has grown her social media following to distribute endometriosis education, worked with lawmakers to raise awareness and corresponded with leading medical organizations — including the American College of Obstetricians and Gynecologists — to improve treatment guidelines. 

So, when ACOG announced updates to its endometriosis guidelines last month without warning, Berna was shocked. The new guidelines come with some improvements, she told Straight Arrow News. But the new recommendations do not meaningfully tackle the new ground needed to improve diagnostic or treatment delays of the disease, she said.

“All of us who are really involved in the community are aligned about how to treat this disease,” Berna said. “So, it’s frustrating that those who think about endometriosis all day, every day, believe care should be one way, but the folks that are in charge of setting the guidelines for care aren’t necessarily even aware of what that looks like.”

Why are the new ACOG endometriosis guidelines controversial?

ACOG said in last month’s news release that more guidance will be coming. An ACOG spokesperson declined to specify when the additional guidance will come or what it will entail. The organization also declined to answer SAN’s additional questions, citing the confidential process for creating guidelines. 

An estimated 10% of women have endometriosis worldwide, according to the World Health Organization, yet, receiving a diagnosis can be an uphill climb. According to Yale Medicine, it takes an average of four to 11 years to diagnose the chronic, inflammatory disease that occurs when tissue similar to the lining of the uterus grows elsewhere in the body. It often causes debilitating pain, problems with bowel movements or urination and infertility. There is no definitive cure or known cause.

With more than 62,000 members, ACOG is the leading professional association of physicians specialized in women’s health in the United States. Its practice and treatment guidelines set the standard of care across the country. Last year, the organization made news for its updated guidance for pain management during the insertion of intrauterine devices and endometrial biopsies. 

Berna said that the previous guidance, issued 15 years ago, incorrectly defined endometriosis; it also recommended hysterectomy as a cure for the disease — something specialists agree is not a cure because the disease is found outside of the uterus. While endometriosis is predominantly found in the pelvic cavity, it has been found on nearly every organ in the body, including the kidney, lungs and brain.

How do the updated standards change endometriosis treatment?

The new guidelines make some positive strides for endometriosis care, Berna said. For one, the disease is correctly defined, and is recognized as a systemic, inflammatory condition that affects people from adolescence to post-menopause. It also emphasizes that minorities and marginalized communities often encounter more diagnostic and treatment delays. 

Previously, the guidelines said that endometriosis could only be diagnosed by examining lesions removed during surgery under a microscope. ACOG now says the disease can — and should — be treated through a symptom-based assessment, physical examination or both, to curb diagnostic delays.

However, that guidance is already sparking confusion. Viral social media posts show some doctors’ takeaway from the update: Surgery is no longer necessary for endometriosis at all. 

The first line of defense for endometriosis treatment often is birth control, which can mitigate painful periods and manage symptoms. But it will not shrink or remove the disease. The only way to do that, doctors say, is to surgically remove it. 

“The standard of care for women presenting with painful periods without any diagnosis, was to start them on hormonal birth control medications,” said Dr. Alyssa Small Layne, a minimally invasive gynecologic surgeon at Howard University Hospital. “So with these guidelines, that pathway doesn’t change, it just has a different label.”

Berna said the guidelines may have left too much room for interpretation.

“It seems like two different people could look at the bulletin and take away different things,” she said. “So maybe that speaks that there needs to be more clarity.”

Dr. Kelly Wright, vice chair of gynecology at Cedars-Sinai and director of the Minimally Invasive Gynecological Surgery division, told SAN she struggled to find what was new in the updated guidelines, aside from encouraging doctors to treat patients’ pain without waiting. Wright said the guidelines came as a disappointment because of “what it doesn’t say.”

While the new guidelines suggest MRIs and ultrasound can help detect the disease, they do not specify that most radiologists are not trained to catch it. The imaging is also highly specialized. There is a specific “endometriosis protocol” for MRIs, and ultrasounds for patients who could have endometriosis are significantly longer and more intensive than the standard ultrasound. But none of these nuances are spelled out in ACOG’s recommendations, Wright said.

“I applaud them for saying, ‘Hey, don’t ignore people and begin treatment,’ but in actuality, that was already happening for patients,” she told SAN. “What wasn’t happening was an acknowledgement of the disease, a long-term plan, a referral process to specialists, expert surgeons to help them and the whole multi-disciplinary team that can go along with working on pain.”

Previously, many OB-GYNs performed a “peek and look,” in which the physician performed a diagnostic laparoscopy to determine whether endometriosis was present, then go back later to remove it. ACOG now recommends removing endometriosis when it is first seen to eliminate repeat surgeries. But the guidance did not specify that it should be done by a specialist or define what a specialist is. 

And that, Wright said, is a problem. 

“We’re always disappointed by ACOG and their stance of endometriosis and expertise required to treat it,” she said. “When you have guidelines but it doesn’t have the nuance in it, I think you actually give OB-GYNs less flexibility and less permission to do something.”

Without a real definition of who is an endometriosis specialist, the field will continue to suffer, Wright said.

“When you’re not recognizing the people who treat this as certified sub-specialists, that results in not getting adequate reimbursement for the surgeries so then, you have fewer people going into fellowship and you have a lack of hospital support for physicians who are doing this work,” Wright told SAN. “It all rolls downhill, which results in lack of patient care and a patchwork quilt of OB-GYNs who are trying to do something but don’t necessarily have that full skillset to take care of endometriosis.” 

Why is there a gap in endometriosis research funding and specialists?

People with endometriosis often go years without diagnosis because their pain is dismissed, largely due to an educational gap about the disease.

The National Institutes of Health allocated just $28 million to endometriosis research in 2024. That’s about $4.30 for each of the estimated 6.5 million women in the United States with endometriosis. For comparison, Crohn’s disease received $90 million in 2022 — about $130 per patient.

It’s not just money; it’s also time. Endometriosis is hardly taught or discussed during medical school.

Endometriosis specialists always will be gynecologists, but not every gynecologist is an endometriosis specialist, according to The Seckin Endometriosis Center. There were more than 50,000 obstetrician gynecologists in the United States in 2018, according to the U.S. Department of Health and Human Services, yet worldwide, there are only 200 to 300 endometriosis specialists who can properly treat and surgically remove endometriosis.

Those specialists have specific training in treating the disease and prioritize treating endometriosis patients rather than delivering babies or providing generalized women’s health care. They are equipped to perform what is considered the gold standard treatment for endometriosis — excision surgery, in which the disease is cut out and removed by its “root.” This has been shown to lead to lower rates of recurrence and better long-term relief.

Dr. Melissa McHale, a surgeon and co-founder of Washington Endometriosis and Complex Surgery in Washington, D.C., said ACOG must codify these delineations to offer the highest standard of care.

“We would never accept an incomplete surgery for gynecologic cancer or placement of a mesh to partially correct prolapse simply because the surgeon lacked the skillset to perform the best surgery for the patient,” McHale said. “So why does ACOG fail to distinguish optimal treatment of endometriosis from these other conditions?”

Small Layne said the new guidelines feel incomplete because they focused more on diagnosis than treatment. 

“It left me frustrated because I felt like there was a huge missing piece by not even having a small note about the treatment of endometriosis,” she said. “If we don’t have new guidance on how you treat endometriosis once somebody is diagnosed with endometriosis, I wonder if OB-GYNs are going to fall back on the type of management that they have already been doing, because nothing here changes how we manage somebody after they have been diagnosed with endometriosis.”

Ella Rae Greene, Editor In Chief