Penn PCOS Center to undergo name change in effort to improve care

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One of the most common conditions affecting women — an estimated 1 in 10 worldwide — has gotten a name change that doctors hope will help dispel myths and lead to better care.

Polycystic ovary syndrome, or PCOS, is a lifelong condition that’s best known for causing irregular periods, hormone imbalances and difficulty getting pregnant.

But its effects go far beyond the reproductive system, said Dr. Anuja Dokras, director of the Penn PCOS Center. And the new name of the PCOS Center at Penn Fertility Care will soon reflect that.

The new name — polyendocrine metabolic ovarian syndrome, or PMOS — emphasizes research, which was outlined in a recent paper published in The Lancet medical journal, that announced the name change. The authors include a host of metabolic conditions, including obesity, insulin resistance, Type 2 diabetes, hypertension and cardiovascular disease, as well as psychological effects like depression, anxiety and eating disorders.

“It was considered as a gynecologic condition affecting women’s health,” Dokras said. “And over the last two to three decades, my research and other international researchers have shown that this condition is not just about reproduction.”

Dokras, who co-authored the paper, said that the condition’s previous name left a lot of these symptoms out of the conversation.

“Because the focus had been so much on reproduction, counseling regarding all these other complications was either not done or inadequate,” she said. “So we’re hoping, from a patient perspective, this is going to be a big change.”

The name change is also designed to clear up a persistent point of confusion that Dokras said frequently eats up the limited time physicians have to explain PMOS to their patients.

“[PCOS] suggests that there are cysts within the ovaries,” Dokras said. “And when you think about anything that’s a cyst — [it’s] fluid-filled, it ruptures, it causes pain — that’s not what we see in PMOS.”

In fact, what doctors initially thought were ovarian cysts are actually a normal part of the reproductive anatomy — egg follicles that, due to the condition, have failed to mature, and as a result build up in the ovaries.

“And so that’s the misunderstanding, you know, ‘I have pain in my belly, it’s related to PCOS.’ But that wasn’t really the underlying pathophysiology,” Dokras said. “And so, now that we’ve taken away that word polycystic, I think physicians and clinicians like myself won’t be spending a lot of time correcting that misconception that patients come in with.”

Dokras and her colleagues hope that the shift in emphasis will not only reduce confusion, allowing clinicians more time to discuss symptoms and treatment options, but also help lead to increased, and earlier, diagnoses. Some studies have suggested that up to 70% of people with PMOS go undiagnosed worldwide.