Polycystic ovary syndrome: what it is, how it's treated and why it's often misunderstood

Polycystic ovary syndrome (PCOS) affects millions in the United States, but it also remains overwhelmingly misunderstood by both patients and medical professionals. Many people with PCOS are stuck taking a variety of medications to treat the vast array of symptoms they experience, as no single medication has been created to treat the disorder. Tired of bandaid solutions, doctors are expressing frustration with the lack of research and funding allotted to combatting the condition.

What is PCOS?

Polycystic ovary syndrome is a common hormonal disorder that as many as five million women and people assigned female at birth in the U.S. are diagnosed with. It involves an imbalance that occurs when ovaries produce excess hormones — in particular, "unusually high levels of hormones called androgens," which are male reproductive hormones, said the Cleveland Clinic. Typically, people with PCOS experience "irregular menstrual cycles, missed periods, and unpredictable ovulation." They may also develop small follicle cysts on their ovaries due to insufficient ovulation. Despite the name "polycystic," you do not have to have ovarian cysts to be diagnosed with PCOS.

The disorder is one of the most common causes of infertility and is usually diagnosed when patients are in their 20s or 30s. While it is still not clear what exactly causes PCOS, someone has a higher chance of getting it if they are obese or if others in their biological family have it. Due to the heightened levels of androgens, PCOS can result in "increased facial or body hair, hair thinning or hair loss on the scalp, and acne," said the Jama Network.

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While "usually framed as a reproductive issue" because PCOS has been linked to infertility, it can "also affect metabolic health — including blood sugar, blood pressure and cholesterol levels," said The New York Times. People with PCOS often experience chronic inflammation, which "occurs when the immune system is overstimulated for extended periods of time." They are also at a "higher risk of developing cardiovascular disease, endometrial cancer and diabetes."

How is PCOS treated?

Treatment is complex and typically involves working to soothe the various symptoms a patient is experiencing. "It's not one condition, it’s a spectrum and it has implications for your overall health," said Lubna Pal, the director of the Yale Medicine PCOS Program. "But these issues are controllable."

While there is "no cure for PCOS," weight loss "improves many of the associated health conditions," so many doctors suggest that "dietary modifications and exercise should be prioritized," said the Jama Network. Birth control can also "decrease production of androgens" and be used to "regulate menstrual cycles for individuals who are not attempting to become pregnant." People with PCOS who struggle with their weight and insulin resistance may benefit from metformin, "an oral medication that decreases insulin and blood glucose levels." Patients can treat excess hair growth with oral medications like spironolactone that block androgens, though these "cannot be used if pregnancy is desired due to possible harm to the fetus." Hair growth can alternatively be lessened with "eflornithine cream applied to the face" or by "laser hair removal, shaving, or electrolysis."

PCOS has additionally been earmarked as one of the illnesses that diabetes medication Ozempic and other similar weight loss drugs could help treat. Some doctors have already begun prescribing Ozempic off-label to PCOS patients, and small studies are being conducted to test its efficacy as a treatment. One of the most surprising side effects is increased fertility, including in people with PCOS, leading to what has been dubbed the Ozempic baby boom.

To this day, the Food and Drug Administration has not approved a medication specifically targeting PCOS. After decades of "disagreements over what, exactly, defines the condition" as well as a lack of research, "PCOS is still poorly understood," said NBC News. The symptoms vary so widely among patients that it is unlikely any single drug would help everyone, said Heather Huddleston, a reproductive endocrinologist at the University of California, San Francisco and director of UCSF’s PCOS Clinic, to the outlet. Many patients and the doctors who care for them say they want "better options — treatments for the condition's root causes rather than bandages for individual symptoms," NBC added. Still, the lack of investment in PCOS research has hampered doctors' ability to find help for their patients. "It gets very messy to try to identify one treatment that's going to work for everybody," Huddleston said.