A hormonal condition affecting 1 in 8 women around the world just got a new name in hopes of improving care. It Is now called polyendocrine metabolic ovarian syndrome instead of polycystic ovary syndrome.
Researchers and supporters of the change said the old name, often shortened to PCOS, is inaccurate. It reduced a complex hormonal or endocrine disorder to a misunderstanding about cysts and a focus on ovaries, contributing to missed diagnoses and inadequate
treatment, said the Endocrine Society, a global group of physicians and scientists.
“The thought behind that is that one, there’s no cysts in the ovary, so it’s very confusing,” said Dr. Melanie Cree, one of the authors of the Lancet article and a pediatric endocrinology expert at the University of Colorado Anschutz. “The hope was that with a more comprehensive and accurate name change, that it would start to enable and push better care.”
The name change – made after 14 years of collaboration between experts and patients – was published in The Lancet on Tuesday.
The condition is characterized by fluctuations in hormones that can affect weight, metabolic and mental health, the reproductive system and the skin.
It is associated with metabolic syndrome, a group of health conditions that increases your risk of Type 2 diabetes, heart disease and stroke, Dr. Sarah Hutto with the University of Minnesota Medical School said in an online article put out by the university.
No one knows exactly what causes the condition, but there’s evidence that genetics and obesity play roles, according to the Cleveland Clinic.
Symptoms vary, which can make it tough for doctors to diagnose.
It is associated with irregular menstrual cycles and excess production of a group of hormones known as androgens, which can cause acne and hair growth or thinning. It may also cause follicles on the ovaries, although not abnormal cysts. But not all of these findings are required for the diagnosis.
To make the diagnosis in teens, Cree said, the patient has to have both irregular periods and signs of high androgens. This can include high blood levels of the hormones or symptoms such as severe acne or chest hair.
Cleveland Clinic experts say it is the most common cause of female infertility, because not ovulating frequently can result in not being able to conceive.
Having the condition may also increase your risk of certain pregnancy complications, such as gestational diabetes or preterm birth. Still, most people with the condition can successfully carry a pregnancy.
Cree says the No. 1 treatment is lifestyle changes, such as eating less processed food, exercising and getting a good night's sleep.
“We’re not trying to be judgmental. There is science to back this up,” she said. “So in PMOS, there is too much of the hormone insulin in many women, and that insulin confuses the ovary to make too much testosterone. And it’s the high testosterone that is causing all the symptoms.”
Other treatments include insulin-sensitizing medicines such as Metformin, medications that block androgens and hormonal birth control.
But Hutto stresses that management of the condition should be individualized to address specific symptoms and concerns. For example, those who plan to get pregnant may want to focus on fertility treatments while others may be more interested in options like hormonal birth control.
Researchers and doctors are spreading the word about the name change to their peers at meetings and through medical societies and other means. They hope it raises awareness about the reality of the condition and how they can best help patients.
“I’m very excited about the name change,” Cree said, “as are the majority of my colleagues.”
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