PCOS, a condition impacting millions of women worldwide, gets a new name

(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 messenger system) of the body, which can lead to widespread impacts, she added.

The road to changing the name took 14 years and worldwide collaboration of 56 patient and professional organizations, according to the Lancet paper.

“This shift will reframe the conversation and demand that it is taken as seriously as the long-term, complex health condition it is,” said Rachel Morman, Chair of Verity PCOS UK, in a news release.

The hope is that a new name will help give the condition the attention it deserves, Dunair said. Physicians in the gynecology field have done a pretty good job of taking the condition seriously, she said. But, because PMOS impacts so many parts of the body, all kinds of medical specialties should be more aware and collaborate to effectively treat patients, she said.

Many in the field are excited about the new name change, but Dunaif worries that it still doesn’t quite capture the latest understandings of the condition. For example, family histories suggest that those without ovaries may also be impacted by the metabolic aspects of this condition, she said. And the name might be more accurate if it broke it up into subtypes such as for people who primarily experience reproductive symptoms or those who have metabolic symptoms, she said.

Vash-Margita, however, thinks PMOS is a name that reflects the realities of the mental and physical impacts much better and “captures the condition in a much better way, reflecting multiple changes that occur,” she said.

A term that better captures that reality may carve the way for better diagnoses, new treatments and increased insurance coverage for the condition, added Dr. Christina Boots, associate professor of obstetrics and gynecology at Northwestern’s Feinberg School of Medicine.

“Women’s health is notoriously underfunded,” she said. “Recognizing that it really spans not just reproductive issues, but mental health and metabolic health as well, maybe will help enhance the number of dollars and the number of studies that are to understand it and treat it.”

How to get the care you need

When should you talk to your doctor about PMOS? One vital sign is a history of irregular menstrual cycles, Dunaif said. Having eight or fewer menstrual cycles a year, or having cycles that last than 40 days per cycle is a sign you should be evaluated for a hormonal problem, she said.

Your doctor can check your hormones for insulin resistance or elevated androgen, a hormone which can cause things like acne, balding or increased body hair, Boots said.

Much of the current medical approach to PMOS is managing symptoms rather than treating the underlying cause, Dunaif said.

The first intervention advised is usually to make lifestyle changes toward a balanced diet and increased exercise, Vash-Margita said. Weight loss has been associated with improvement in PMOS symptoms, she said.

Medications can be prescribed for the metabolic symptoms, and GLP-1s have been found to be helpful, although there are no major trials in women with PMOS, Dunaif said. Birth control pills are commonly used to regulate menstrual cycles and reduce the hormones that can cause body hair, acne and hair loss, she added.

Fertility treatments may be used to help induce ovulation in people who are trying to conceive children with this condition, Dunaif added.

Still, the answer to treating PMOS isn’t just patients knowing what to look for and what to do, experts say. One key in good PMOS treatment is finding healthcare providers who can really take the time to look at the whole picture and make good referrals to make a plan together, Boots said.

“Somebody’s dietitian tells them one thing, and their psychiatrist tells them another thing, and their dermatologist tells them another, so they’ve got so many players who are in their niche and often don’t see the full picture,” she said. “Seeing these patients as people, and doing our best to give them care with empathy and individualizing their care, I just think is so important.”

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