But getting diagnosed with PMOS can be a challenge, in part due to the variety of symptoms. Research suggests that it can take, on average, one year and at least three doctor’s visits to get an official PMOS diagnosis, with some women taking multiple years of trial and error before getting to a diagnosis based on varying symptoms. 

Dr. Melanie Cree, a physician researcher at the University of Colorado Anschutz, told the Washington Examiner that the goal of the name change is in part to help women get treatment for the underlying metabolic, or cellular, dysfunction that causes the range of PMOS symptoms. 

Cree, a key player in the global name change effort, said in an interview with PBS in May that an excess of insulin in patients with PMOS “confuses the ovary to make too much testosterone,” which causes the syndrome’s symptoms.

In Cree’s work with GLP-1 weight loss medications, made by Novo Nordisk and Eli Lilly, and PMOS patients, the revolutionary medications have the promising signs of being able to stabilize insulin levels in patients and thereby restoring sex hormone balance.

She says it is unlikely the Food and Drug Administration will approve GLP-1 medications any time soon directly for PMOS. But, she said women with PMOS may be able to get GLP-1 weight loss medications covered by their insurance if they have co-occurring conditions that already have FDA approval, like Type 2 diabetes, non-alcoholic fatty liver disease, or obstructive sleep apnea.

“They’re approved for obesity, type two diabetes, fatty liver disease, and obstructive sleep apnea, so those are all experienced in excess by women with PMOS,” Cree told the Washington Examiner.  “That’s really what’s behind the name change, is making sure that people are paying attention to those.” 

Name change and promise of GLP-1s

PMOS advocates say the original name made it difficult for patients to understand their symptoms and for clinicians to provide sufficient care, such as treatment for underlying metabolic dysfunction. 

The original name, Polycystic Ovarian Syndrome, implied that patients must have cysts on the ovaries to be diagnosed with the condition, which advocates say puts too much focus on the state of the ovaries rather than the overall metabolic and hormonal health of the patient. 

Over the past 10 years, an international team of health professionals, including Cree, gathered global surveys from more than 14,000 patients and healthcare professionals to inform the name change with a mix of personal experience and clinical data. 

The new name and corresponding clinical guidelines, according to the University of Rochester Medical Center, recognize that the ovaries in a patient with PMOS do not necessarily have “cysts” but rather just excess follicles, or small fluid-filled sacs on the ovaries that secrete hormones.

The excess of testosterone in women with PMOS is caused by problems with insulin resistance or difficulty in breaking down and using sugar in the body. 

Women and men with insulin resistance often find themselves in a negative cycle: excess weight increases insulin resistance, and insulin resistance makes it difficult to lose weight. 

Lifestyle changes to lose weight, including diet and exercise, are frequently the first-line recommendations for women with PMOS, but Cree’s research indicates that the weight loss associated with GLP-1s significantly helps with PMOS symptoms, including stabilizing periods.

Cree told the Washington Examiner that her most recent work indicates that the rapid weight loss and corresponding insulin stabilization lead to the ovaries decreasing testosterone production.

In a forthcoming paper to be published soon in the journal Fertility and Sterility, Cree and her colleagues report women using Novo Nordisk’s GLP-1 semaglutide who lost 10% or more of their initial body weight had an average of 51% lower testosterone levels.

Six out of eight women in the small study had improved period regularity by the end of the trial period.

Making a new drug for PMOS

Developing a singular treatment for PMOS is not likely in the near future, largely because of the wide variation in symptoms for the condition and the difficulty of establishing clinical trials for reproductive drugs.

Clinical trials for FDA approval must have clear, measurable endpoints, which Cree says is a challenge for PMOS.

For example, it is possible to design a clinical trial for a drug to treat a singular PMOS symptom like hair loss or excessive facial hair growth. But to meet the FDA’s criteria, the drug will need to prove itself to be more effective or have fewer side effects than other treatments already on the market.

The larger problem, however, is with developing guidelines for a clinical trial to use GLP-1s for the hormonal imbalance and infertility side of PMOS, including the risk of pregnancy if ovulation becomes regular after weight loss.

Women are advised to stop taking GLP-1 medication within four to eight weeks of attempting to conceive, but there have been hundreds of women who have become pregnant while taking GLP-1s, in part due to the hormonal shifts following massive weight loss.

Cree said the risk of pregnancy in a clinical trial designed to rebalance hormones in patients with PMOS is likely too high.

“It’s unfortunate, because people, women in particular, want new products, but it is so litigious for any adverse event setting of a clinical trial,” Cree said.

Clinical studies funded by the National Institutes of Health involving GLP-1s in Cree’s PMOS lab at the University of Colorado explicitly say enrollees “must avoid becoming pregnant during the study.” 

A spokesperson for Novo Nordisk told the Washington Examiner that they “welcome independent research investigating the safety, efficacy, and clinical utility” of their seminal GLP-1 semaglutide, but they “have no immediate plans to do so.”

Eli Lilly did not respond to a request for comment. 

What patients should do

In the immediate term, Cree advised women with a PMOS diagnosis or related symptoms to ask their healthcare provider for a comprehensive metabolic screening to determine if they have any co-occurring conditions for which insurance would cover GLP-1 medications. 

For example, the Centers for Disease Control and Prevention estimates that more than half of women with PMOS will develop Type 2 diabetes by age 40, and many insurance plans will cover GLP-1 medications for Type 2 diabetes.

Women with PMOS are up to four times more likely to develop a specific kind of non-alcoholic fatty liver disease called Metabolic Dysfunction-Associated Steatotic Liver Disease, a condition in which its most severe form has FDA approval for GLP-1 treatment. 

Obstructive Sleep Apnea, or the obstruction of breathing during sleep, also has FDA approval to be treated with GLP-1s and is statistically more common in women with PMOS. One study found that women with PMOS are 30 times more likely to have Obstructive Sleep Apnea than women without it, even after controlling for body weight differences.

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Being an informed patient and advocating for yourself are essential to getting the most up-to-date care, Cree said.

“Women are learning, unfortunately, more and more that they have to advocate for their own care, and so take advantage of the name change and make sure they get the metabolic screening,” said Cree.