Shannon Cohn had her first symptoms of endometriosis when she was 15: debilitating cramps around her period, intense hot flashes and cold sweats and, as she tried to put it delicately, gastrointestinal effects. She once described her pain to a doctor as the feeling that her entire stomach was on fire.
It still took another 14 years and visits with at least 20 different experts — OB-GYNs, primary care physicians and gastroenterologists — before Cohn was finally diagnosed with endometriosis, a disease in which uterine tissue grows on other pelvic organs or, in rarer cases, elsewhere in the body. Some of the doctors she saw dismissed Cohn’s pain as a normal part of womanhood; others acknowledged her symptoms but when they could not find a clear cause, passed her along to other specialists.
Although that may sound like a shocking amount of time, Cohn’s experience is an extreme version of what so many of the estimated 6.5 million American women living with “endo” are forced to endure.
Endometriosis affects at least one in 10 women of reproductive age, but those women wait agonizingly long — an average of seven-plus years — for an accurate diagnosis, to say nothing of getting actual treatment. And while celebrities like Lena Dunham and Halsey have helped draw media attention to the fact that endometriosis is one of the most common gynecologic issues, federal funding for research has been slashed in recent years — and there is no indication that diagnostic delays are disappearing.
“There is ample evidence that the medical community has, for centuries, failed to adequately address women’s pain.”
No one knows exactly what causes some women to grow endometrial tissue outside of the uterus, but the potential impact of this disease on women’s lives is well-documented. In addition to the potential for chronic pain, roughly 40 percent of patients with endometriosis deal with some level of fertility issues. There is also some suggestion that women with endometriosis may have an elevated risk of ovarian cancer.
There is no blood test for endo; the only way to be absolutely certain a woman has it is through laparoscopy. And women say they often bring their symptoms to doctors, only to have them dismissed or misdiagnosed. Cohn, for example, was told she had irritable bowel syndrome, or possibly some kind of rheumatic disease.
At a macro level, there is ample evidence that the medical community has, for centuries, failed to adequately address women’s pain.
Research shows women say they experience pain more frequently and more severely than men, but are treated for it less aggressively. In emergency rooms, women wait longer than men to get pain medicine, and surveys have found that 90 percent of women who live with chronic pain believe they’ve been discriminated against by physicians. The reasons behind that so-called gender pain gap are knotty, but reflect the fact that most medical research is conducted on men. Plus, until the 1990s women were excluded from most drug safety trials, so relatively little is known about the specific ways they react to disease and pain and the medicines used to treat them.
There is also an enduring tendency to dismiss women as emotional and sensitive. A recent meeting on the challenges of endometriosis patient care held by the Society for Women’s Health Research identified the damaging normalization of period pain by women and their doctors as a reason for multi-year diagnostic delays.
“I went to lots of different doctors and time and time again, I got dismissed or misdiagnosed,” Casey Berna, a patient advocate, told HuffPost. “I was told I had anxiety issues that were causing my problems, and that I had a low pain tolerance.”
Which is why patient advocates who are fed up with a medical system they believe has failed them are publicly going head-to-head with the American College of Obstetricians and Gynecologists — the country’s major OB-GYN group — challenging it to update its diagnosis and treatment standards.
Broadly, those advocates want assurances that OB-GYNs will be better trained in spotting and quickly diagnosing endometriosis. More specifically, they have thrown their weight behind the use of excision surgery to remove areas of endometrial tissue, rather than other options such as hormonal management or hysterectomy as a last resort.
“Endometriosis patients have lost faith in ACOG and the majority of its members,” said Berna, also a co-organizer of an endometriosis patient protest held outside of ACOG’s Washington, D.C., headquarters earlier this month, in a press release.
Berna declined to say how many women had attended the April protests outside of the ACOG headquarters, but pointed to a digital petition imploring the group to change its standards of care that had 8,500 signatures. Though hardly a critical mass, ACOG has signaled it is taking the issue seriously, telling HuffPost it is in the process of reviewing its current standards of care — although it is not clear the organization believes there is sufficient evidence to make some of the more specific changes advocates like Berna would like to see.
“It’s a multi-step process that includes review of all the latest literature,” Dr. Hal Lawrence, CEO and executive vice president of ACOG said in a statement to HuffPost — plus input from providers and patients. Berna said she’d spoken to Lawrence about the process, a conversation ACOG confirmed with HuffPost.
As another sign that the group understands the current system isn’t working for endo patients, ACOG has publicly urged the U.S. House and Senate to increase spending on endometriosis research, citing a dip in National Institute of Health funding from $16 million in 2010 to $7 million in 2018.
In the meantime, patients say the status quo is not good enough.
“I saw good doctors. I researched them,” said Cohn, who is now 42 and who directed and produced a documentary about endometriosis inspired by her own struggle to get help. “I was an educated medical consumer. But even those experts didn’t catch it.”
Clarification: Language in this story has been updated to note that while endometriosis can cause endometrial tissue to grow outside the uterus on pelvic organs, it can also spread beyond the pelvic organs.