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.
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