What to know about the condition

PCOS is linked to both reproductive and metabolic dysfunction and is estimated to affect one out of every 10 women of reproductive age worldwide, including some 6 million Americans.

Research has found that women of reproductive age with PCOS have an increased risk of diabetes, are nearly twice as likely to have high blood pressure, and are up to three times as likely to develop serious heart issues like blocked arteries or heart attacks. PCOS patients also have an increased risk of endometrial cancer, partly because hormonal imbalances can prevent the uterus from regularly shedding its lining.

However, researchers say the condition has been considered an often ignored "orphan disorder" — in large part because it isn't as well funded as other women's health issues, which is an area that's already under-resourced.

One recent study found that average funding for PCOS from 2016 to 2022 was around $32 million compared to roughly $262 million for rheumatoid arthritis and roughly $66 million for tuberculosis, despite those diseases having similar or even lower numbers of cases, degrees of poor health, and deaths.

Because of limited research on PCOS, the condition is often missed by healthcare providers and misunderstood by patients. Currently, there is no cure or FDA-approved treatment for PCOS, and health experts have warned patients about prevalent misinformation about the condition.

Why PCOS was renamed PMOS

In a paper published in The Lancet and presented at the European Congress of Endocrinology, an international consortium of doctors, researchers, and patient advocates announced that PCOS had been renamed to PMOS — an effort years in the making. 

When a condition is seen as affecting only one organ, everything from research funding to clinical guidelines "is all in that box," said Helena Teede, an endocrinologist and professor of women's health at Monash University and the paper's lead author. "And in this condition, it was in the wrong box."

This has often led medical students to only learn about the condition in gynecology courses, even though it is an endocrine condition that affects many parts of the body.

When choosing a new name, consortium members said they wanted something that would avoid stigma, be easy to communicate, and was scientifically accurate. Out of 90 votes, 87 members chose PMOS over endocrine metabolic ovulatory syndrome and ovulatory metabolic endocrine syndrome. 

Over the next three years, consortium members are planning to conduct an international campaign to communicate and explain the new PMOS name to help improve understanding among patients and providers.

"Women's health is notoriously underfunded," said Christina Boots, associate professor of obstetrics and gynecology at Northwestern University's Feinberg School of Medicine. "Recognizing that it really spans not just reproductive issues, but mental health and metabolic health as well, maybe will help enhance the number of dollars and the number of studies that are to understand it and treat it."

The name change could also prompt doctors to recommend more screenings for metabolic and cardiovascular conditions for their PMOS patients. Although patients are typically prescribed birth control for their PMOS symptoms, it doesn't address all the condition's symptoms, including potential insulin resistance or cardiovascular risk factors like high cholesterol.

"We're hoping it will change practice," Cree said, noting that "[t]he majority of women don't get appropriate metabolic screening," which means doctors may miss serious health problems.

Overall, "this shift will reframe the conversation and demand that [PMOS] is taken as seriously as the long-term, complex health condition it is," said Rachel Morman, chair of Verity PCOS UK.