About a century ago, surgeons operating on a woman noticed what looked like little sacs on her ovaries. They thought they might be cysts of some kind, so when they named her condition—she also had high levels of male hormones and couldn’t get pregnant—they called it “polycystic ovary syndrome” (PCOS).
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.
But those cysts continued to get in the way of understanding the true nature of the disease. “They were not actually true cysts at all,” says Dr. Helena Teede, an endocrinologist and professor of women’s health at Monash University in Australia. The sacs were eggs whose development had been arrested, as a result of the broader endocrine disruption. In the latest guidelines for diagnosing the disorder, examining the ovaries isn’t even necessarily required.
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.
The confusion can mean that the patients have trouble being understood and getting appropriate care. “There's no other condition that I treat where almost every person who comes into my room ends up in tears because they’re listened to. I've got boxes of tissues,” says Teede. “If you ask any endocrinologist, they will say the same thing. When someone listens to them, when they get diagnosed, when they understand what it is, it's such a relief.”
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At a National Institutes of Health meeting in 2012, clinicians and researchers discussed changing the name. In the years since, surveys have gone out to thousands of patients and a coalition of providers and patients from around the world have discussed whether a new name was required, and if so, what the name should be.
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?
“We’re hoping it will change practice,” says Dr. Melanie Cree, a pediatric endocrinologist and professor at the University of Colorado Anschutz who worked on the renaming. The focus has often been on fertility and reproduction, at the expense of the other effects of the disorder.
“The majority of women don’t get appropriate metabolic screening,” she says. That means that serious health problems can be missed, sometimes for years.
For instance, in adolescents with PMOS, “cardiovascular disease starts very early,” says Cree. But when teenagers are diagnosed, while they might be offered birth control pills to help rein in symptoms, sometimes “no discussion about metabolic conditions, no screening for metabolic conditions occurs.” That can have serious health consequences later.
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Thinking of PMOS as a metabolic disorder could mean using treatments like GLP-1s in these patients, a contrast to the mainly reproductive-focused treatment options, says Cree.
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.”
Under the latest criteria, PMOS is indicated if patients meet 2 out of 3 criteria: (1) excess male hormones called androgens, (2) irregular menstrual cycles, and (3) high levels of anti-mullerian hormone (AMH) in blood, or ovaries with many arrested follicles seen on ultrasound.
“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?
Over the next three years, the new name should percolate through the medical and scientific communities, culminating with PCOS being replaced with PMOS in the International Classification of Diseases in 2028.
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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