A hormonal disorder affecting an estimated 1 in 8 women worldwide has been renamed in an effort to improve diagnosis, treatment and long-term care.
The condition long known as polycystic ovary syndrome, or PCOS, is now being called polyendocrine metabolic ovarian syndrome. The change follows 14 years of collaboration among clinicians, researchers and patients who say the previous name was misleading and too narrowly focused on ovarian cysts.
Supporters of the update say the old term contributed to confusion, delayed diagnoses and missed opportunities to treat the broader metabolic and hormonal effects of the condition.
Dr. Kim Estler, an obstetrician-gynecologist with Crystal Run Healthcare, said the underlying medical condition has not changed, but understanding of it has evolved.
“There’s nothing intrinsically about the condition that’s changed,” Estler said. “It’s largely just a rebranding.”
She said the new name is meant to reflect the condition’s broader impact beyond the ovaries.
“We’re going from polycystic ovarian syndrome to polyendocrine metabolic ovarian syndrome,” she said. “At face value, that probably doesn’t mean much to the average person. But what we’ve seen is that many women understandably believe PCOS has only to do with the ovaries, and in reality it’s always been more than that.”
PCOS, now sometimes referred to as PMOS, is a hormonal and metabolic disorder involving irregular menstrual cycles, elevated androgen levels such as testosterone, and small ovarian follicles visible on ultrasound. Despite the name, many patients diagnosed with the condition do not have symptomatic ovarian cysts.
Estler said that misunderstanding has contributed to confusion among patients for years.
“Cysts mean different things to women,” she said. “A large ovarian cyst that ruptures or twists is a different entity entirely. What we’re talking about with PCOS are tiny follicles on the ovary that are usually just an ultrasound finding.”
Diagnosis is typically based on what are known as the Rotterdam criteria, which require two of three features: elevated androgens, irregular ovulation or menstrual cycles, and polycystic-appearing ovaries on ultrasound.
“You really only need two of those three criteria,” Estler said.
She added that symptoms of elevated androgens can include acne or excess hair growth, while irregular cycles may mean infrequent menstruation, sometimes only a few times per year.
Experts say the updated name also reflects growing awareness that the condition is tied to broader metabolic risks, including insulin resistance, weight gain, prediabetes and type 2 diabetes. Patients may also face higher risks of high blood pressure, cholesterol abnormalities and cardiovascular disease.
Estler said mental health impacts are also common.
“We see increased anxiety and depression among patients,” she said.
Because symptoms span multiple systems, the condition is often missed or diagnosed late. Some estimates suggest that 70 to 80 percent of cases may go undiagnosed.
Estler said fragmented care across specialties can contribute to that gap.
“Our healthcare system is so siloed,” she said. “You might see a gynecologist for irregular periods or an endocrinologist for elevated insulin, but we are not always connecting the dots.”
She said the hope is that the name change will improve communication among providers and increase patient awareness.
“If patients can recognize that these symptoms belong together, they may come in sooner and say, ‘Could this all be one diagnosis?’” she said.
The condition often begins in adolescence, and symptoms such as irregular periods or mild facial hair growth may be dismissed as normal variations.
Estler said that can delay care.
“If that’s your norm from the beginning, you may think it’s normal,” she said. “But typically, cycles should occur about every month or so.”
The condition is also a leading cause of ovulation-related infertility, though many patients are able to conceive naturally or with treatment.
“There are plenty of women with this condition who get pregnant without reproductive technologies,” Estler said. “But some do need assistance, and it’s a condition we understand fairly well and can treat.”
While the name change is largely symbolic, Estler said it reflects a deeper shift in medical understanding and patient communication.
“This is about long-term health risks and connecting the pieces between diabetes risk, periods, fertility and obesity,” she said. “It impacts life in multiple different ways.”
She said providers are also increasingly focused on expanded screening, including metabolic labs such as fasting insulin and lipid panels, in addition to reproductive hormone testing.
Estler said researchers still have questions about the underlying causes of the condition, including genetic factors and how best to improve early diagnosis, but said treatment has become more effective.
“We have interventions,” she said. “The goal is to meet the patient’s needs in the moment, whether that’s regulating cycles or addressing hormone levels.”
She added that one of the most important messages for patients is that the condition is more complex than its old name suggested.
“This is not about cysts on the ovaries,” Estler said. “It’s about long-term health risks and connecting all the pieces.”
Image: A technician draws blood at a women’s clinic in Jackson, Miss., on Dec. 17, 2021. (AP Photo/Rogelio V. Solis, File)