By Madeline Holcombe, CNN
(CNN) — A condition that can impact women’s fertility and diabetes risk goes undiagnosed in many cases, but experts hope giving it a new name will help more patients receive care.
Polycystic ovarian syndrome, or PCOS, can present as cysts in the ovaries, as the name would suggest. However, the condition can include many more symptoms, including irregular menstrual cycles, difficulty getting pregnant, female-patterned baldness, type 2 diabetes and cardiovascular disease, according to the World Health Organization (WHO).
An estimated 10% to 13% of reproductive age women around the world are impacted by PCOS, but an estimated 70% don’t know they have it, according to WHO.
One reason could be that the name is not very descriptive of the actual condition, said Dr. Helena Teede, an endocrinologist and professor of Women’s Health at Monash University in Australia. Teede, who is leading the process to change the name, is lead author of a paper published Tuesday in the Lancet on the name change.
Over the course of her more than 25-year career, Teede said she’s had to dispel misunderstandings that lead people to think that the condition is just about cysts on the ovaries, which has resulted in missed diagnoses and inaccurate treatment.
The Lancet paper officially changes the name of the condition to one that researchers hope can provide more clarity: polyendocrine metabolic ovarian syndrome, or PMOS.
It isn’t just about cysts
A primary goal of the new name is to give importance to the wide range of impacts the condition has on those who have it.
“By calling this condition polycystic ovary, we’re missing the big picture,” said Dr. Alla Vash-Margita, associate professor of obstetrics, gynecology and reproductive sciences at Yale University and division chief for pediatric adolescent gynecology at the Yale School of Medicine.
“There was a lot of stigma and myth related to this name. People thought they have large cysts, which they do not have,” she said.
The syndrome was first seen as a reproductive disorder, said Dr. Andrea Dunaif, professor of medicine in the division of endocrinology at the Icahn School of Medicine at Mount Sinai in New York.
It was found to be associated with a slight increase in male hormone levels that can cause irregular periods and fertility issues. Then, in the 1980s, she said that researchers found it was also associated with insulin resistance, or the body not responding to normal circulating levels of insulin.
“The body has to produce more insulin, and if the body can’t kind of keep up with the needs, then diabetes can develop,” Dunaif said.
Since then, research has suggested that it is a major metabolic disorder, with increased risks for conditions such as liver and heart disease, she added.
More recently, other symptoms have also been associated with PMOS, including sleep apnea, depression, anxiety and body dysmorphia, Vash-Margita said.
A name to take seriously
The “polyendocrine” part of the new name better describes it as an endocrine or hormone condition, Teede said. People with PMOS have a disturbance in the endocrine (or chemical