When actor Sasha Pieterse Sheaffer shared the details of her polycystic ovary syndrome (PCOS) diagnosis on a recent episode of the podcast The Squeeze—an experience many of us witnessed because it aligned with her tenure on Pretty Little Liars—the internet’s response was filled with positivity.
“[As] someone who has PCOS, I appreciate more people talking about it. For years, I thought I was alone,” one commenter wrote on an Instagram post sharing the news.
Sheaffer joins a growing list of celebrities like Jaime King, Victoria Beckham, and Keke Palmer who have recently become candid about their own dealings with the disorder. And they are among a huge number of women and people who menstruate affected by PCOS: According to the World Health Organization, 8 to 13% have the condition. And because it’s both misunderstood and misdiagnosed, it’s likely that the numbers of those suffering with it are in fact significantly higher. (WHO estimates that up to 70% remain undiagnosed worldwide.)
What is PCOS?
Polycystic ovary syndrome is an increasingly common hormonal disorder among women and menstruating people. It is often characterized, says Monica Grover, MD, an ob-gyn and chief medical officer at New York’s VSpot, by irregular menstrual cycles, a higher concentration of circulating androgen hormones, insulin resistance, possible obesity, and/or the presence of cysts on the ovaries filled with immature eggs. Those who have it may also deal with hair loss, hirsutism (excessive hair growth in areas like the upper lip, chest, and back), and difficulty getting pregnant, which is why PCOS has become a leading cause of infertility, adds Sabrina Mason, cofounder of Pollie, a virtual lifestyle care platform that helps people manage PCOS and other complex chronic conditions via evidence-based nutrition and coaching.
What causes PCOS?
There is no one specific cause. It is usually born of a combination of genetic and epigenetic factors, plus there are environmental and lifestyle impacts. Elisabet Stener-Victorin, a professor and principal investigator of the research group Reproductive Endocrinology and Metabolism in the department of physiology and pharmacology at Stockholm’s Karolinska Institutet, has been studying PCOS since 1995. She says there are a number of “risk genes” associated with the disorder. “But they explain only maybe 10% of the inheritance,” she says, adding that epigenetic elements, like the exposure in utero to excess androgens, can program developing cells to develop the disease in adulthood. “Not everyone will develop the adult disease or the disease at the adult stage, but they are predisposed to develop it,” adds Stener-Victorin. PCOS is also frequently associated, says Pollie cofounder Jane Sagui, with diets high in simple carbohydrates and inflammatory foods and high perceived stress levels. “There is an almost double the heightened risk of PCOS for Hispanic populations, and studies show a connection to socioeconomic status as well, with people in lower income brackets more likely to have PCOS and more likely to experience severe symptoms,” adds Sagui.
How do you know if you have PCOS?
You may start to show signs of PCOS as early as adolescence. “In order to receive a PCOS diagnosis, a person must fulfill two of the following three criteria: high androgens (male hormones like testosterone), irregular or missed periods (cycles that do not occur in a 21-to-35-day time frame), or polycystic ovaries (having an abnormally high number of follicles surrounding your ovaries),” says Mason of what is referred to colloquially as the Rotterdam criteria.
Why is it so hard to get diagnosed with PCOS?
One of the reasons PCOS goes widely undiagnosed may be because it shares many common symptoms with other gynecological conditions. “Insulin resistance and chronic inflammation often present with other ailments that are also debilitating and are also worked up first,” explains Dr. Grover. Some doctors will also just zero in on irregular periods. “Many females who do have irregular periods and are not trying to get pregnant are offered a combined oral contraceptive or other similar hormone treatment to fix the timing of periods without a [blood] workup,” says Melanie Cree, MD, PhD, an associate professor of pediatric endocrinology at the University of Colorado and the director of the PCOS Multi-Disciplinary Clinic. Unified guidelines for the diagnosis of PCOS were not published until 2018, so approaches to diagnosing it have varied.
“Many providers are still not up-to-date with those guidelines,” says Dr. Cree, adding that new supplementary guidelines were just released just last month indicating that levels of a person’s anti-Mullerian hormone can now be used for diagnosing PCOS. What’s crucial is that patients be ready to advocate for their care. “Once a woman sees that her menstrual patterns are irregular, plus if there are any other changes such as visceral weight gain, hyperpigmentation on areas such as the neck, or an increase in facial hair, that’s an appropriate time to address these signs or concerns with her physician,” says Dr. Grover. Sagui recommends being prepared to ask your doctor for a list of tests to rule out or confirm PCOS. “It is a short list—an androgen panel and a transvaginal ultrasound because the third checkbox is self-reported (irregular periods),” adds Sagui. “But despite how simple it is, many patients find that they need to be extremely precise in what they ask for.” Dr. Cree points to tools like the AskPCOS app, plus PCOS Challenge, to provide additional context so women can make sure they can get the most out of a doctor’s appointment.
How can PCOS impact your health?
PCOS’s impact on fertility is widely discussed and well founded: The hormonal imbalances that come with it, Dr. Grover explains, can have the effect of impairing ovulation. “But it’s important to stress that women with PCOS are not infertile,” adds Stener-Victorin, adding that while it’s more challenging, pregnancy with PCOS is not impossible. And among those undergoing IVF, says Stener-Victorin, there is no difference in pregnancy rate between a person who has PCOS and another who doesn’t. “The problem can come with pregnancy complications like miscarriage, preeclampsia, and gestational diabetes,” she notes. But PCOS can also pose significant health issues for those who aren’t interested in becoming pregnant: It greatly increases the risk for diabetes (50% chance by age 40), cardiovascular disease, adrenal fatigue, thyroid imbalances, endometrial cancer, and mental health conditions like anxiety and depression. “PCOS also does not go away for many people after menopause,” adds Mason.
How is PCOS being treated?
For the majority of people with PCOS, it is also a metabolic issue, says Mason, adding that 70 to 90% are insulin resistant. While the treatment of PCOS is highly individual and symptom oriented, addressing underlying blood-sugar issues can have a broadly positive impact. “In general finding ways of eating and living that encourage balanced blood sugar and low inflammation is the ultimate North Star of finding hormone balance,” says Sagui. Pollie’s credo is about helping members navigate it with the help of registered dietitians and health coaches.
How you do that can vary: For some, it may be reducing or eliminating gluten and dairy and only doing low-intensity exercise; for others it may mean just being mindful about caffeine and alcohol and upping their strength training. But diet and lifestyle shifts are hugely important in treating PCOS, says Dr. Cree. “Many people think that providers are being mean by leading with lifestyle changes, but this is how PCOS works,” she adds. Treatments that address hormone balance can be important add-ons, says Dr. Grover, with medications like metformin (which lowers testosterone levels and addresses insulin resistance), oral contraceptives, or bioidentical hormones (something offered at VSpot). Some PCOS sufferers may find supplements like alpha-lipoic acid, inositol, vanadium, or chromium to be helpful as well, says Dr. Grover. And GLP-1s like Ozempic are also increasingly being prescribed for those with PCOS to address weight gain and insulin resistance. “As many women with PCOS have type 2 diabetes (independent of BMI) and many are obese, it can be a promising treatment,” adds Stener-Victorin, though she believes there is a need for larger longitudinal studies investigating the effects and safety.
So, are the numbers really rising?
They are, says Dr. Cree. At the 2023 Endocrine Society International meeting, the rise in numbers was confirmed. “Another determinant can be there is more awareness as to clinical signs and symptoms and appropriate workups in countries where PCOS was not so readily diagnosed [in the past] due to a lack of resources,” says Dr. Grover. With rising awareness comes a rise in diagnosis. “Providers are getting better at diagnosing PCOS, and women are getting better at advocating for their health,” adds Dr. Cree. What both Dr. Cree and Stener-Victorin are counting on is that the growing interest in talking about PCOS (and the celebrity attention around it) will lead to a growing interest in investing money in scientific research. “PCOS research is woefully underfunded,” says Dr. Cree. “The hope would be that by raising the profile for PCOS, we can move forward to get more funding—and better data.”
