Doctors recently renamed polycystic ovarian syndrome, or PCOS, as polyendocrine metabolic syndrome, or PMOS, to better reflect the condition’s effects throughout the body.
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A condition that affects up to 1 in 8 women around the world and is one of the leading causes of infertility has a new name: polyendocrine metabolic ovarian syndrome, or PMOS.
The name change came after more than a decade of debate among experts, who had long warned that the previous name, polycystic ovarian syndrome, or PCOS, did not capture the body-wide effects of the disorder.
Now, doctors and patients hope the new name will improve diagnosis of the condition and eventually lead to better, more targeted treatments. The new name was announced in May in the journal The Lancet.
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“This is a metabolic syndrome that involves many different systems and requires many different specialists to come together,” said Dr. Mibhali Bhalala, an ob-gyn at Kaiser Permanente in Redwood City.
PMOS is essentially a hormone disorder that causes many downstream effects in women’s bodies. Women with PMOS tend to have irregular menstrual cycles and may be prone to weight gain and male-pattern hair growth. They are often insulin insensitive, which makes them more prone to developing diabetes and heart issues.
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PMOS was first identified in the 1930s and given the name Stein–Leventhal syndrome after the doctors who described it. Later, doctors switched to PCOS after identifying what looked like cysts on the ovaries under a microscope.
But cysts was never the right word to describe what doctors were seeing. What looked like cysts were actually follicles lining the ovary holding immature eggs that could not be released. And these so-called cysts were just one part of the condition.
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The focus on cysts could create confusion for patients navigating a constellation of symptoms throughout their lives, and often led to delayed diagnoses.
“Hearing ‘polycystic,’ it’s like, ‘Well, I don’t have cysts,’” said Kate Chenoweth, a publicist in Los Angeles and former San Francisco resident.
Chenoweth, who was diagnosed with PMOS last year at age 37, said she spent years being told by medical professionals that her symptoms were simply “bad periods.” She started seeing doctors at age 12, when her periods would last for nine days and come twice a month. She would ask what was wrong with her and doctors would say, “Nothing.”
“You spend your whole life kind of being gaslit into thinking … it’s something you just have to grit your teeth and bear,” she said.
Diagnosing PMOS
Along with the new name are new guidelines for diagnosing it. Previously, doctors needed to identify cysts on the ovaries to make a diagnosis, but that’s no longer the case. Instead, doctors look at three criteria: irregular menstrual cycles, elevated levels of male hormones and certain findings on the ovaries from an ultrasound.
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“It’s not a black and white diagnosis,” said Dr. Sun Kim, a Stanford endocrinologist who specializes in treating PMOS. “You only need to meet two out of three criteria.”
For some women, PMOS is closely tied to problems like insulin resistance, raising blood sugar levels and increasing the risk of cardiovascular disease. Other women mainly experience irregular periods or have trouble conceiving. Some experience a combination of everything. PMOS also has been associated with mental health issues, including depression and anxiety.
“Women with PCOS, probably because of the elevated hormones, are at risk for sleep apnea and fatty liver disease,” Kim said. “I think (the name) puts attention on how multifaceted this disease is.”
The previous name could also be stigmatizing for some women who “felt almost embarrassed” at the idea of having cysts on their ovaries, said Dr. Heather Huddleston, director of UCSF’s PMOS clinic.
“People could be discriminated against or it could be stigmatizing, to feel like you have this ovarian fertility condition,” Huddleston said. “So for them, moving it away from ‘cysts’ was important.”
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The future of PMOS
Doctors and patients hope the new name will improve research into the condition and, eventually, treatments. There is no cure for PMOS, and it’s usually treated with lifestyle changes, hormone replacement and medications like insulin as needed.
PMOS historically has not been well studied for a condition that affects 170 million people worldwide, said Bhalala. That’s partly because it was widely considered a gynecologic condition, which isn’t as well funded for research as, say, metabolic syndromes. With greater understanding that PMOS affects much more than fertility and periods, doctors hope to attract more money to fund more research and clinical trials.
“Maybe there are some medications that have been used for diabetes or weight loss that can ultimately work to balance this metabolic syndrome,” said Bhalala.“I think it will open up ways to research this that is not in women’s health corner.”
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For patients like Chenoweth, the validation this name change provides is meaningful, not only as a recognition of experiences that were long dismissed, but as a guide for the future.
“That all these things are very much explainable, and also to a certain extent treatable, is really empowering,” she said, “and honestly life-changing in terms of just mindset and not feeling like it’s just this endless abyss of no answers.”