This week, a global medical consortium of doctors and researchers announced that PCOS (polycystic ovary syndrome) would be renamed PMOS (polyendocrine metabolic ovarian syndrome), an effort to improve diagnosis and care. The new name underscores that it is not simply a condition relegated to the ovaries but a metabolic and hormonal disorder that can have widespread effects throughout the body. “The term polycystic ovary syndrome has long been recognized as inaccurate and potentially harmful,” the team responsible for the initiative wrote in their report. “The current name reflects only one organ and fails to capture the disorder’s multisystem nature.”

This is a crucial move towards improving outcomes for a disorder that affects more than 170 million women globally. According to the most recent estimates by the WHO (World Health Organization), up to 13% of women of reproductive age have PMOS, and nearly 70% of those cases remain undiagnosed. The “why” of it all is complicated—but so is the diagnosis itself. And as more high-profilers like Florence Pugh, Keke Palmer, and Victoria Beckham share their own journeys with PMOS and conversations around it grow online (there are over a million posts devoted to it on TikTok), so too does confusion and misinformation. We spoke to doctors about the hurdles around getting a diagnosis, the most-used treatments (both approved and off-label), and the burden PMOS can have not just on the body, but on the psyche as well.

What is PMOS?

PMOS (formerly PCOS) is an extremely common hormonal disorder affecting women of reproductive age that often presents with irregular periods and higher amounts of androgen hormones (like acne or hirsutism). It’s also a very broad diagnosis, with many different presentations and degrees of severity, says New York-based reproductive endocrinologist Margaret Natchigall, MD.

While most commonly known as a disorder of the reproductive system (impacting the ability to ovulate regularly, which presents as irregular periods or infertility), PMOS is just as intertwined with the metabolic and dermatologic systems, too, says Natchigall. Recent research led by Jia Zhu, MD, a pediatric endocrinologist at Boston Children’s Hospital, suggests that PMOS is part of a broader metabolic and reproductive disorder that affects both women and men starting early in life. “Our findings indicate a higher genetic risk for PMOS can manifest in children even before they reach reproductive age,” says Zhu. But, as of now, there’s still no definitive answer for what causes PMOS… yet at least.

How is PMOS diagnosed?

While there is no single blood test that can—poof!—alert you to PMOS, there are clear diagnostic criteria. The most commonly used are the Rotterdam criteria, says Seattle-based double board-certified OBGYN and reproductive endocrinologist Lora Shahine, MD, which require two of the three following symptoms: irregular or absent ovulation, signs of excess androgens (like acne, excess hair, or elevated hormone levels), and polycystic-appearing ovaries on an ultrasound. PMOS is often referred to as a diagnosis of exclusion because other conditions, like thyroid, pituitary, and adrenal gland disorders, must be ruled out. “This can prolong the process, add to frustration, and delay access to the right treatment,” says Dr. Shahine.

The real difficulty, says L.A.-based board-certified OBGYN and co-founder of Ovii Health Thais Aliabadi, MD, can also be finding an informed doctor. “Symptoms are overlooked, dismissed, or spread across different specialties, and physicians may not immediately recognize the full picture, meaning women don’t get the focused evaluation they need,” says Aliabadi. “Too often women’s symptoms are dismissed as stress or normal hormonal fluctuations, leaving many without answers for years.” PMOS can also be overdiagnosed, especially if only an ultrasound is relied on, since ovaries that read as “polycystic” are common, adds Shahine. “A misdiagnosis can cause unnecessary worry, inappropriate treatments, and missed opportunities to address the true, underlying issue,” she adds.

One area that can be more challenging for diagnoses is among adolescents, a time when irregular periods, ovarian cysts, and acne are considered a normal part of puberty. While doctors don’t have to wait until adulthood to diagnose, they should abide by adolescent-specific criteria, says Aliabadi. Evaluations should only start at least two years after menarche, she says, and a diagnosis should be made only after irregular cycles are persistent and there are clear signs of high androgens. “It’s important to address the symptoms these young patients are experiencing without rushing to label them with PMOS,” she adds.

While there are scores of women whose PMOS remains undiagnosed, more women than ever before are getting a diagnosis, too. The reason may be twofold, says Dr. Shahine: environmental and lifestyle factors, such as rising rates of obesity and possible endocrine-disrupting chemical exposures, and also increased awareness among women and teens too. Though Dr. Zhu points out that it’s difficult to know the exact prevalence since there is limited data on menstrual periods and symptoms of higher-androgen hormones in population-based studies.

How PMOS impacts the body

The most common effects of PMOS are acne, irregular periods, excess hair growth, weight gain, and hair thinning, says Dr. Shahine, plus anovulation (meaning the ovary doesn’t release an egg regularly which causes irregular cycles and can make it harder to get pregnant) and insulin resistance (meaning the body doesn’t respond well to insulin leading to higher blood sugar and a greater risk of diabetes). PMOS can show up differently (and be harder to pinpoint) during the hormonal swings of perimenopause and menopause. Cycles become irregular during perimenopause because of fluctuating estrogen and progesterone levels, and that can make it harder to distinguish what’s related to natural aging versus what’s PMOS, says Dr. Aliabadi. “Because women with PMOS often maintain higher androgen levels and more follicles in the ovaries, menopause may also occur slightly later,” says Dr. Aliabadi. But, she adds, once menstrual cycles stop and any irregular bleeding is resolved, the metabolic risks (like insulin resistance and cardiovascular disease) must still be monitored.

While PMOS remains a leading cause of infertility and comes with higher chances of some pregnancy complications (like gestational diabetes, hypertension, and preeclampsia), most women with a diagnosis can still, with the right protocol and monitoring, conceive, says Dr. Aliabadi, adding that optimizing weight and metabolic health by balancing blood sugar is key.

How PMOS impacts mental health

Though it’s not as widely understood, and grossly understudied, reproductive psychiatrist and founder of Mavida Health, Sarah Oreck, MD, always thinks about PMOS as a neurometabolic condition because of its significant mental health impact. “There’s real biology at work here because insulin resistance disrupts neurotransmitter function, chronic inflammation affects mood regulation, and elevated androgens directly influence emotional stability,” says Dr. Oreck. Anxiety and depression is two to three times more common in women with PMOS (the stress of trying to conceive and worries about weight gain can also factor in here), and, says Oreck, though the magnitude of risk is lower, it causes elevated rates of eating disorders, obsessive-compulsive disorder, and PTSD, and women are 1.5 to 2 times more likely to develop PMDD (premenstrual dysphoric disorder). While many more rigorous studies are required to establish causation (a problem considering the underfunding of women’s health), research thus far has shown consistent correlation. Natchigall points also to emerging research suggesting that altered gut flora and gut dysbiosis can contribute to insulin resistance and mood disorders, though this remains investigational, and more studies are needed to really understand the connection.

For women, delays in receiving a PMOS diagnosis can be clinically significant, says Dr. Oreck. “By the time patients receive a diagnosis, many have developed secondary mental health concerns related not just to the hormonal dysregulation itself, but to years of unexplained symptoms and medical dismissal, like being told ‘your labs are normal’ when no one checked the right things or ‘just lose weight’ without actual support,” says Dr. Oreck, adding that PMOS can impact how you metabolize certain psychiatric medications. Currently, the mental health association with PMOS is strong enough that the Endocrine Society recommends routine screenings for depression and anxiety as a standard part of care in women and adolescents with PMOS. “Addressing mental health isn’t optional or secondary in PMOS care; it’s central to it,” says Dr. Oreck.

Promising PMOS Treatments

“Because we still don’t know exactly what causes PMOS, clinical care is currently confined to managing the symptoms rather than treating the underlying causes,” says Dr. Zhu. Treatments, whether it’s medication or diet and lifestyle adjustments, depend on each patient’s individual symptoms and goals. Birth control pills remain a first-line option for regulating periods, unwanted hair growth, and improving acne, while spironolactone is often added to further block excess androgens, says Dr. Aliabadi. Ovulation-inducing medications like letrozole are first-line for women who are trying to conceive, and metformin has long been used to address issues of insulin resistance and help with ovulation. The biggest buzz among PMOS medications right now, though, is the frequent off-label use of GLP-1s like Ozempic and Wegovy and Tirzepatide drugs like Mounjaro and Zepbound. “By improving how the body handles insulin, they can help lower blood sugar, reduce testosterone, and support more regular cycles, plus many women see improvement in acne, unwanted hair growth, abdominal fat, and appetite control,” says Dr. Aliabadi. “These medications have been a game changer for some PMOS patients.”

Diet and lifestyle tweaks can be helpful too. “Poor sleep can worsen insulin resistance and weight gain, both central to PMOS, so good sleep hygiene is an important part of management,” says Shahine. While some doctors often say to “just lose weight” and very restrictive diets are regularly peddled online, the ideal nutritional approach is simple: whole foods with plenty of protein, healthy fats, and fiber, and less sugar and carbohydrates. “Extreme dieting or cutting out entire food groups is not only hard to maintain, but it can also make things worse,” says Dr. Aliabadi, adding that habits should feel realistic, not restrictive. Women with PMOS are not always overweight (“lean PMOS” refers to those who otherwise meet the diagnostic criteria but are not struggling with weight gain), and sometimes the ones who are can feel incredibly frustrated when diet and exercise aren’t making an impact. “When there is a clear mismatch between the effort they put in and the results, it often creates shame, anxiety, or a sense of failure, and combined with hormonal changes, fertility worries, and a pressure to control their bodies, the risk of disordered eating goes up significantly,” says Dr. Aliabadi.

As for the supplement space, while there are a lot of products being marketed for PMOS, women should tread carefully. Inositol (Aliabadi’s supplement brand Ovii is focused on it) boasts the strongest data for insulin sensitivity, supporting ovulation, and reducing androgens. Vitamin D (which many with PMOS are deficient in) can improve menstrual regularity and metabolic health, and Coq10 has some smaller, promising studies behind it for egg quality and metabolic markers, says Shahine, adding that while helpful, these supplements should only be used alongside, not instead of standard medical therapies. And, Oreck adds, women should seek out specific recommendations from their doctors since the supplement space is wildly unregulated and operates outside the purview of the FDA, which means what the label is advertising, may not be what you’re getting. “The current anti-science climate and this administration’s hostility toward evidence-based medicine create an environment where supplement companies can exploit consumers, making unsubstantiated claims and selling unproven cures with even less accountability than before,” adds Oreck.

The PMOS advice coming from Dr. TikTok abounds, and while women should ideally be relying on information dispensed by someone with an MD versus millions of followers, if their symptoms have been historically ignored at their doctor’s office, it’s easy to understand why they might turn online. A broad survey of women by Clue found that nearly 60% of respondents aged 16-24 rely on unverified social media sources to understand their reproductive health, and over 40% of women reported feeling confused or anxious after encountering conflicting health information online. The dearth of evidence-based information, the pushing by influencers of one-and-done supplements, hormone hacks, and extreme diets, and the oversimplification of something as complex as PMOS is not just troubling; it can have dangerous consequences, particularly if it causes women to delay seeking actual medical treatment or, says Aliabadi, triggers disordered eating or worsens symptoms. She recommends using social media only for finding community, not medical advice; for that, make an appointment with your gynecologist, primary care physician, or an endocrinologist for hormone testing, metabolic labs and possibly a pelvic ultrasound. Most importantly, trust that you know your body best, and if you’re dismissed, advocate for yourself. Says Aliabadi: “Listen to your body, track your cycles, write down your symptoms, continue to seek proper evaluation, ask directly for testing, and don’t stop at the first ‘you’re fine’ if something doesn’t feel right.