It made sense at the time. But what these doctors couldn’t know was that the woman’s reproductive problems were just one symptom of a much broader endocrine disorder, which a large body of research in the last century has found affects metabolism, the cardiovascular system, and skin health, among other systems. Indeed, people with PCOS have much higher rates of Type 2 diabetes and higher rates of heart disease, scientists have found.
Still, the conception that this is a disease of the ovaries has lingered. On May 12, a paper in the Lancet announced the results of a push to rename the disorder that’s been growing for more than a decade, led by Teede: PCOS is now polyendocrine metabolic ovarian syndrome, or PMOS. Advocates say the change will open the door to more sources of research funding for the disorder, as well as clarify its true nature for patients and doctors, for whom the so-called cysts have long been a source of confusion.
The understanding of the disorder among scientists has changed, but the understanding among patients and doctors has lagged, says Rachel Morman, chair of PCOS charity Verity UK and a patient with the condition herself. “There was still a really, really large component of women with the condition that still believed that they had ovarian cysts, and, frighteningly, a huge number of professionals that also believed that,” she says.
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The answer from patient surveys was a resounding yes, change it. The new name, polyendocrine metabolic ovarian syndrome, aims to recast the disorder as a complex hormonal imbalance that affects metabolism as well as reproduction.
What will this new name change about how PMOS is treated?
“The majority of women don’t get appropriate metabolic screening,” she says. That means that serious health problems can be missed, sometimes for years.
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It also means that funding for studying the disorder and treatments will no longer be limited to sources that focus on ovarian health, says Teede. “Even though it affects 170 million reproductive-age women, even though the health and economic burden is huge, it hasn't had much investment at all in research,” she says. “Getting it categorized differently…means we get more evidence on how to treat it.”
“60% of women with the condition only need those [first two], they don't need the ovaries assessed in any way,” says Teede. “For the other 30-40%, they can either have a blood test or an ultrasound, and arguably, a blood test is actually cheaper and much more convenient than an internal ultrasound.” She expects that going forward, the number of ultrasounds experienced by people with the condition will decline.
What happens next?
The coalition expects some pushback, specifically from businesses and influencers committed to the PCOS branding. “It costs them money, and they have a loud voice and a loud platform,” says Teede. “And yet, we know from women in the community they really want this.”
For now, the team is savoring their moment of triumph. “All the endocrinologists are very excited,” says Cree.
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