Polycystic Ovary Syndrome, commonly known as PCOS, will now be called a different name. Doctors say Polyendocrine Metabolic Ovarian Syndrome, or PMOS, is more accurate and could help improve diagnosis.
PMOS is a hormonal imbalance that occurs when the ovaries make excess hormones. It’s characterized by fluctuations in hormones, with impacts on weight, metabolic and mental health, skin and the reproductive system, according to the Endocrine Society. Roughly one in eight women are affected by PMOS during their reproductive years — but estimates find that 70% of patients go undiagnosed.
Dr. Megan Evans, an OB-GYN and clinical director of Tufts Medical Center’s Women’s Health and Longevity Program, said last week’s name change was led by clinicians but also patients and their experiences.
“The thing about PCOS is, it’s sort of an inaccurate name,” said Evans. “The goal really here is to not change how this is diagnosed, but change how it’s described so it captures a wider audience.”
The previous name of PCOS focused more on ovaries and implied the presence of ovarian cysts, which is not a symptom of the condition, often contributing to missed diagnoses and inadequate treatment.
The name change comes after 14 years of collaboration between 50 organizations and thousands of patients and health professionals to develop a new name for the condition.
Rae Estapa of Somerville, who is a PMOS patient, said her diagnosis has affected most aspects of her life.
“It has shaped everything from my health, nutrition, identity, social life, especially topics of motherhood,” she said.
PMOS is a leading cause of infertility.
Symptoms can vary for each person, which often makes it difficult for doctors to diagnose. The condition causes irregular menstrual periods, excess hair growth, acne and infertility. Those with PMOS are at higher risk for certain health conditions, like diabetes and high blood pressure, according to the Cleveland Clinic.
Estapa adds that she’s been dealing with PMOS since her early teens and took medication for years. She’s met other patients who had clear PMOS symptoms early on but still took a decade to get diagnosed.
“It is one of those things that a lot of people don’t land upon because sometimes the doctor might not be aware of PMOS and how it affects and shows up in other systems in the body,” she said.
Evans said the name change “captures what the syndrome really is,” which can help improve diagnosis.
“Polyendocrine is looking more at the hormonal disturbances that can happen with this condition, whether that’s insulin resistance, androgens, which is higher testosterone levels, or change in gonadotropins, which are sort of our sex hormones,” said Evans.
Estapa says the new name feels “very validating.”
“I like that people can talk about it more openly because a lot of these symptoms were just sort of kept kind of in the shadows, especially if you had the facial hair and weight gain,” she said. “More conversation, more light — that’s gonna help more people.”
