After years of combined effort, an international coalition has come up with a new proposed name for one of the reproductive disorders affecting millions worldwide. Women’s reproductive health has long been a blind spot in the medical industry, but the group hopes that renaming polycystic ovary syndrome (PCOS) to polyendocrine metabolic ovarian syndrome (PMOS) will help illuminate a better path forward in treating it.
Why the push to change the name PCOS?
For decades, millions of patients with symptoms like “irregular periods, pelvic pain, excess body hair and acne” have been diagnosed with PCOS, said The New York Times. Getting a diagnosis can be difficult, and those who do encounter stigma and imperfect treatment options along the way. An international consortium of doctors and researchers concluded that the condition’s name was part of the problem. Many PCOS patients “don’t have ovarian cysts at all,” but they often have “widespread hormonal and metabolic dysfunction.”
After more than a decade of “vigorous debate” over the need for a different name that more precisely describes the syndrome, a gathering of 56 organizations debuted the result: polyendocrine metabolic ovarian syndrome, or PMOS, said Stat News. It was introduced in a policy paper published in The Lancet and presented at the European Congress of Endocrinology in Prague.
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Since the previous name of the illness didn’t accurately describe the condition, it contributed to “delayed diagnosis, fragmented care and stigma, while curtailing research and policy framing,” the consortium members said in the paper. The change was based on input from dozens of organizations and experts, as well as feedback from more than 14,000 patients.
The new name “moves away from the incorrect focus on cysts” to recognizing this as a “much broader condition,” said lead study author Helena Teede, the director of Melbourne’s Monash Center for Health Research and Implementation, to The Guardian. The effects of PMOS on the body are “virtually all endocrine — hormonal.” Patients instigated a name change because they knew “how much they have suffered because of the name, and they were really passionate.” The efforts were “unprecedented,” and nobody has “put this much effort into a name change ever.”
In the policy paper, the authors lay out a plan for the World Health Organization and the International Classification of Diseases to adopt the new name over the next three years, potentially making it the international standard by 2028.
How will the name change affect treatment?
The researchers hope the name change will “transform how patients understand the condition” and “how doctors treat it,” said the Times. When a condition affects one organ, everything from research funding to education to clinical guidelines is “all in that box,” Teede said to the outlet. “And in this condition, it was in the wrong box.”
The change could also have “immediate implications for some patients,” prompting doctors to “recommend more screening for metabolic and cardiovascular problems,” said the Times. Renaming it should “redirect” professionals “into thinking about this as a long-term chronic condition and not just a period problem,” Basma Faris, an assistant professor of obstetrics, gynecology and reproductive science at the Icahn School of Medicine at Mount Sinai, said to the outlet.
Funding for studying the disorder and treatments will no longer be limited to sources focused on ovarian health, Teede said to Time. Despite affecting “170 million reproductive-age women” and creating a “health and economic burden” that is “huge,” the illness hasn’t had much investment in research. Getting it categorized differently means “we get more evidence on how to treat it.”
Women’s health is “notoriously underfunded,” Christina Boots, an associate professor of obstetrics and gynecology at Northwestern’s Feinberg School of Medicine, said to CNN. Recognizing that it “spans not just reproductive issues, but mental health and metabolic health as well,” may help “enhance the number of dollars and the number of studies that are to understand it and treat it.”
About 5 million to 6 million American women have PMOS, according to the Endocrine Society and the CDC. It affects up to 12% of American women of reproductive age. Despite how common it is, the condition “remains misunderstood and underresearched,” said The Cut, and the World Health Organization estimates that nearly 70% of women who suffer from it have never been diagnosed. Even though the “diagnostic criteria have not changed,” experts hope that a new, more accurate name will “help more people get a diagnosis sooner.”
