Endometriosis Advocates Petition ACOG to Update Treatment Standards

For years, women with endometriosis have spoken out against outdated treatment practices that, too often, leave patients without any significant improvement. Now, a petition is calling for the American Congress of Obstetricians and Gynecologists (ACOG) to update their standards of care for endometriosis patients — a move advocates hope will be a step towards real change for millions of patients.

The petition, which was posted on Causes.com on Sunday, has more than 2,300 signatures so far and calls for ACOG to set up a public meeting between patients, leaders and medical experts to learn how current treatment standards are harming patients as well as set up new standards of care. These standards include better education for doctors, providing resources for patients including referrals to excision experts who can surgically remove endometriosis (considered the best treatment) while preserving fertility and advocating for multi-disciplinary care such as pelvic floor therapy and counseling. The petition also asks ACOG to create medical coding specific to techniques used during excision surgery, so doctors are properly compensated for their work and patients won’t be billed for these treatments as out-of-network services.

The petition is the brainchild of Casey Berna, a social worker and endometriosis advocate living in North Carolina, who knows the effect improper care can have. Berna said she was initially told her painful periods and bowel issues were related to irritable bowel syndrome and anxiety from years of fertility issues. When she had her appendix and gallbladder removed, the surgeons didn’t mention or seem to notice her endometriosis. Since then, she’s had two extensive surgeries to remove lesions and scar tissue throughout her pelvis.

“The more I learned about the disease, the more outraged I felt. Had I been diagnosed in my teens, I could have had less surgeries and a better quality of life,” Berna told The Mighty. “I wanted to prevent other patients from going through what I went through.”

Unfortunately, Berna’s experience isn’t unusual — it takes an average of 10 years to be diagnosed with endometriosis. Those with the condition are often told their pain is all in their heads, or that it’s just “part of being a woman.”

Dozens of women have commented on the petition, sharing similar stories about how they were brushed off, given medications that didn’t work, had surgeries that didn’t fully remove their endometriosis or searched for years to find a doctor who took their pain seriously. The petition has also caught the eye of doctors, including Jeff Arrington, MD — a Utah-based endometriosis specialist — who posted a response to the petition, explaining that too many women are being ignored and too few doctors have the skill to recognize and excise endometriosis.

“‘Nothing more can be done’ is simply not true. In the correctly trained hands there is more that can and should be done,” he wrote. “The current standard of care does not provide the care that our patients deserve and need. The current standard of care simply IS NOT SUFFICIENT!”

Berna said she hopes to keep gathering signatures and plans to target specific ACOG leaders and present the petition to them.

Patients are told they are too young or too old to have endometriosis pain. Patients are given hysterectomies with the promise of relief, only to continue suffering. Patients lose their fertility, their power and their hope. I think coming together to fight for change brings back hope and power. The standards of care need to be changed and the change starts with ACOG.

If they don’t respond the way the endometriosis community wants, Berna said, they’ll have to keep being more creative and more public in the ways they call for the ACOG’s attention.

The Mighty reached out to ACOG for comment and has yet to hear back.