For decades, millions of patients with symptoms like irregular periods, pelvic pain, excess body hair and acne have been told they have polycystic ovary syndrome, or P.C.O.S. Many of them struggle to get a diagnosis and encounter stigma when they do, and treatment options are imperfect.
An international consortium of doctors and researchers has now concluded that a root of these problems is the condition’s name. Many patients diagnosed with “polycystic ovary syndrome” don’t have ovarian cysts at all — but they often have widespread hormonal and metabolic dysfunction.
So P.C.O.S. has been renamed P.M.O.S., or polyendocrine metabolic ovarian syndrome, members of the consortium announced in a paper published in The Lancet on Tuesday, drawing on a yearslong process.
The renaming process involved 56 organizations and surveys of thousands of patients and health professionals. The consortium pursued it, its members wrote in the paper, because the previous name didn’t accurately describe the condition, “contributing to delayed diagnosis, fragmented care and stigma, while curtailing research and policy framing.”
They said they hoped the name change would transform how patients understand the condition — which affects 10 to 13 percent of reproductive-age women, according to the World Health Organization, as well as transgender people — and how doctors treat it.
When a condition is seen as affecting one organ, everything from research funding to education to clinical guidelines “is all in that box,” said Dr. Helena Teede, an endocrinologist and professor of women’s health at Monash University in Australia, and the lead author of the paper. “And in this condition, it was in the wrong box.”
That means medical students often learn about the condition only in gynecology courses, despite it being an endocrine condition that affects many body systems. Beyond gynecological symptoms, P.M.O.S. can cause hair and skin changes, and it is associated with increased risk of obesity, Type 2 diabetes, cardiovascular disease and obstructive sleep apnea.
Because medical education on the condition has focused so heavily on the ovaries, the gynecologists and reproductive endocrinologists who commonly see P.M.O.S. patients often don’t refer them to be screened for those other conditions, or even warn them that they are at higher risk, several experts said.
It is common for patients to be confused by a P.C.O.S. diagnosis if they don’t have cysts, or to be frightened by the prospect of developing them because they believe incorrectly that the cysts may be cancerous, said Dr. Christine Carlan Greves, an OB-GYN at Orlando Health Women’s Institute, who was not involved with the name change. She added that she hoped conversations would become less singularly focused on the condition’s effects on reproduction, because “there’s so much more to a woman’s life than that.”
Dr. Melanie Cree, a professor of pediatric endocrinology at the University of Colorado Anschutz and a co-author of the Lancet paper, said that when she applied for grants through the National Institutes of Health to study the condition, the applications were typically directed to the institute within the N.I.H. that covers reproductive health, which has a relatively small budget.
Dr. Cree said she hoped that, with the name change, P.M.O.S. research would become eligible for funding through the N.I.H. institutes that cover, for example, diabetes and heart disease. (A spokesman for the Department of Health and Human Services did not immediately respond to a request for comment.) Health agencies in other countries, and nongovernmental organizations that fund research, could similarly expand funding opportunities.
Over the next three years, Dr. Teede said, members of the consortium will conduct an international campaign to communicate and explain the name change.
The change could have immediate implications for some patients, prompting doctors to recommend more screening for metabolic and cardiovascular problems. Typically, several experts said, patients are prescribed birth control for their symptoms, if they’re not trying to get pregnant. But, while that can be very effective and will still be part of treatment for many patients, it doesn’t address the condition’s full effects.
With a broader understanding of what the syndrome is, other treatments may emerge. But much more research is needed, Dr. Cree said: Because funding has been so limited, patients are usually treated off-label with drugs that were approved for other conditions.
Dr. Basma S. Faris, an assistant professor of obstetrics, gynecology and reproductive science at the Icahn School of Medicine at Mount Sinai who was not involved in the paper, said patients with P.M.O.S. should be monitored closely for insulin resistance and cardiovascular risk factors like high cholesterol, and counseled about nutrition and other lifestyle changes. She also noted that P.M.O.S. is associated with a greater risk of endometrial cancer, which women should be made aware of so they can be on the lookout for early symptoms.
Dr. Faris said she hoped the name change would “redirect us into thinking about this as a long-term chronic condition and not just a period problem.”