AURORA, Colo. — For 14 years, Grace Hamilton searched for answers. An active woman who enjoyed snowboarding and hiking, she knew something was wrong.
"I was experiencing, like, hair loss and weight gain and, like, really intense acne, really intense mood swings," Hamilton said.
Hamilton got her answer when she moved to Colorado several years ago. She was diagnosed with polycystic ovary syndrome, known as PCOS — a complex condition affecting 1 in 8 women. Symptoms include weight gain, acne, and irregular periods — along with invisible symptoms like insulin resistance, hormonal imbalances, and high cortisol.
Left untreated, PCOS carries a higher risk of diabetes and heart disease. However, the focus and treatment have historically centered on the condition's reproductive — not metabolic — impacts.
Hamilton's diagnosis took more than a decade, partly because her case didn't fit the traditional picture of the condition.
"I never had polycystic ovaries, so that, I think, is part of why my diagnosis was so delayed," Hamilton said.
Now, the condition has a new name. PCOS is being renamed PMOS — polyendocrine metabolic ovarian syndrome — a change medical experts say better reflects the full scope of the disorder and will help prevent delayed diagnoses like Hamilton's.
The push to rename the condition has been building for years.
"There was a meeting in 2012 at the NIH where really people came together and said, 'We think we need to change this,'" said Dr. Melanie Cree, a CU Anschutz professor and researcher.
Cree has been at the forefront of the effort to change both the name and the broader perception of the condition. The work required late nights and early mornings collaborating with experts across the globe.
"My times in Denver were always 2 to 4 AM, and so we'd be on with people from around the world," Cree said.
Those sleepless nights have now paid off. Cree joined academics worldwide as the name change was announced at the European Congress of Endocrinology in Prague on Tuesday.
The next three years will focus on educating both patients and providers to cement the name change and shift public perception of the condition.
"The name, really, I think, serves the goal of what everybody wanted, that it describes everything, not everything, but the majority of things that can happen with this medical condition," Cree said.
The hope is that the renaming will lead to better research, increased funding, and overall improved care for patients.
Cree, an NIH researcher, has noted the difficulty in obtaining sufficient funding for PMOS research throughout her career. According to Cree, women's health research receives the institute's lowest budget and is one of the hardest areas from which to secure grants.
"My first grant for treating this condition was from the American Heart Association. But I had to work really hard and against the name and so, you know, the hope is that it will help with research funding from a larger pot of money, so that our investigators can get more research funding."
Researchers have already begun working toward this goal.
"We're trying to get three clinical trials going for different aspects of PCOS that are all sponsored by different pharmaceutical companies," she said.
Hamilton participated in Cree's most recent clinical trial, which tested the use of GLP-1s for treating the condition. She is currently paying out of pocket for the drug but says the results have been worth it.
"I've lost 100 pounds. My hair has grown back. My adult acne has gone away. It's really changed my life," Hamilton said.
She hopes the name change will mean that someday insurance will pay for this treatment — as well as bring more comprehensive treatment options to the millions of women living with the condition.
"I'm so thankful that moving forward, things could be different," Hamilton said.
