The Tamesis
This week, a global medical alliance of doctors and researchers announced that PCOS (polycystic ovary syndrome) will be renamed PMOS (polyendocrine metabolic ovary syndrome) to improve diagnosis and care. The new name emphasizes that it is not just an ovarian disease, but a metabolic and hormonal disorder that can have widespread effects throughout the body. “The term polycystic ovary syndrome has long been considered inaccurate and potentially harmful,” the team leading the initiative wrote in the report. “The current name reflects only one organ and fails to capture the multisystem nature of the disease.”
This is a key step in improving outcomes for a disease that affects more than 170 million women worldwide. According to the latest estimates from the World Health Organization (WHO), up to 13% of women of childbearing age suffer from PMOS, with nearly 70% of cases remaining undiagnosed. The “why” of all this is complex, but so is the diagnosis itself. As more high-profile figures like Florence Pugh, Keke Palmer and Victoria Beckham share their own journeys with PMOS, and discussion around it continues to grow online (there are over 1 million posts dedicated to it on TikTok), confusion and misinformation also increases. We talked with doctors about the barriers to getting a diagnosis, the most common treatments (both approved and off-label), and the toll PMOS takes not only on the body but also on the mind.
What is PMOS?
PMOS (formerly PCOS) is an extremely common hormone disorder that affects women of childbearing age, often manifesting as irregular menstruation and high androgen levels (such as acne or hirsutism). It’s also a very broad diagnosis, with many different presentations and severities, says New York reproductive endocrinologist Margaret Nachgar, MD.
While most commonly seen as a reproductive disorder (which affects the ability to ovulate normally, manifesting as irregular menstruation or infertility), PMOS is also intertwined with the metabolic and integumentary systems, Natchigall said. New research led by Dr. Jia Zhu, a pediatric endocrinologist at Boston Children’s Hospital, suggests that PMOS is part of a broader metabolic and reproductive disease that affects both women and men starting early in life. “Our findings suggest that the genetic risk for PMOS is higher even before children reach childbearing age,” Zhu said. But, so far, there’s still no clear answer to what causes PMOS… at least.
How is PMOS diagnosed?
While no single blood test can (poof!) alert you to PMOS, there are clear diagnostic criteria. The most commonly used are the Rotterdam criteria, which require two of the following three symptoms, says Lora Shahine, MD, a double-board-certified obstetrician-gynecologist and reproductive endocrinologist based in Seattle: irregular or no ovulation, signs of excess androgens (such as acne, excess hair, or elevated hormone levels), and polycystic ovaries on ultrasound. PMOS is often referred to as a diagnosis of exclusion because other conditions must be ruled out, such as thyroid, pituitary, and adrenal gland disease. “This prolongs the process, increases frustration, and delays getting the right treatment,” Dr. Schein said.
The real difficulty also lies in finding a well-informed doctor, says Thais Aliabadi, MD, a board-certified ob-gyn in Los Angeles and co-founder of Ovii Health. “Symptoms are overlooked, dismissed, or spread across different specialty areas, and doctors may not immediately see the full picture, which means women don’t get the focused assessment they need,” Aliabadi said. “Women’s symptoms are often dismissed as stress or normal hormonal fluctuations, leaving many without answers for years.” Shahine adds that PMOS can also be overdiagnosed, especially if ultrasound scans alone are relied upon, as ovaries that are interpreted as “polycystic” are common. “Misdiagnosis can lead to unnecessary worry, inappropriate treatment and missed opportunities to address the real underlying problem,” she added.
