Penn center adopts new name to reflect evolving understanding of women’s endocrine disorder

A Penn center bearing the name of a common endocrine disorder affecting women is leading the charge to change its name.

Earlier this month, an international group — joined by Anuja Dokras, women’s health professor and director of the Penn PMOS center — announced that polycystic ovary syndrome, long known as PCOS, will be renamed polyendocrine metabolic ovarian syndrome, or PMOS. Dokras said that the change, which came after 14 years of collaboration, was a matter of scientific accuracy.

PCOS is currently defined as a hormonal disorder in which the ovaries may develop numerous small follicles and may not regularly release eggs, often leading to a range of reproductive and metabolic symptoms. However, Dokras said that the original name — which is based upon a 1935 paper — no longer reflects how the condition is understood.

“The word polycystic describing the ovaries was inaccurate,” Dokras said. “Over the last almost 90 years, there’s been a lot of research and a lot of progress, and so we know that there are no big cysts in the ovaries.”

The described cysts are actually follicles, which are structures that contain eggs and play a significant role in fertility.

The new name reflects what researchers now understand to be a multisystem disorder. PMOS highlights the condition’s endocrine basis and how it links to metabolic dysfunction, including insulin resistance, obesity, diabetes, and cholesterol abnormalities.

“We’ve known for a long time that PCOS, as it was understood before, was not just a gynecologic condition,” Dokras said. “It was an endocrine condition, and it had complications, and the complications were metabolic, psychological, dermatologic.”

Penn Medicine researchers helped contribute to that evolving understanding through studies examining patient and clinician experiences with the disorder. Through surveys of both groups, researchers identified significant gaps in diagnosis and treatment, helping inform updated global guidelines.

“Led by Penn Medicine researchers and myself and my group, we surveyed patients to understand the gaps in knowledge,” Dokras said. “We surveyed clinicians to see how well they were making the diagnosis and managing this, and we found several gaps.”

While the change has already begun appearing in academic and clinical settings, Dokras said that implementation internationally will take time. The transition will include changes to research publications and patient-facing education materials over the next several years, with most institutions expected to use both terms for a three-year period.

“We understood that it’s going to take a lot of work, consensus building, and then implementation,” she said. “We were practicing like a PMOS center under the name of PCOS, so the name having changed doesn’t change what we are doing because we were already at the cutting edge and doing all the research and clinical care.”

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