Australian professor leads bid to change the name for polycystic ovary syndrome

Misdiagnosed, missed entirely, and misunderstood. Polycystic ovary syndrome, or PCOS, needs a name change to remove barriers to care.

Monash University professor Helena Teede has led the study to investigate if PCOS should have a name change. Picture: Supplied

Polycystic ovary syndrome is so fundamentally misunderstood, patients, researchers and medical professionals the world over are trying to change its name, with the effort led by Australian medical researchers.

Despite its long list of symptoms, including acne, facial hair, weight gain, diabetes, depression, anxiety, and infertility, Monash University academics have found the name PCOS often leaves people thinking it’s primarily a disease of the ovaries. But dangerous ovarian cysts are not a feature of this chronic condition, and the symptoms most women notice have nothing to do with their reproductive system, the researchers say.

Professor Helena Teede, director of the Monash Centre for Health Research Implementation, said little was known about the broader symptoms or causes of PCOS when it was named in 1935.

The focus on ovarian cysts fails to reflect the reproductive, metabolic and endocrine (hormonal) features of the condition, Professor Teede said.

A Monash University-led research paper surveyed thousands of people across five continents in 2015 and 2023 to gauge support for a name change.

Of the 7708 people surveyed, 86 per cent of PCOS patients and 76 per cent of health professionals supported renaming the condition.

The name PCOS often leaves people thinking it’s primarily a disease of the ovaries. But dangerous ovarian cysts are not a feature of this chronic condition. Picture: iStock

Professor Teede is at the forefront of the bid to change the name, a process she describes as “complicated”.

A new survey, which already has more than 5000 responses, is being conducted across the world, in which patients and health professionals vote to define the terms of a new name. Professor Teede said that in the next phase, representatives from about 100 societies and patient groups will meet in a series of international workshops and go through a “very formal structured process” of voting.

Once the group comes to a consensus, it will endorse the chosen name and begin the dissemination process.

Professor Teede said this decision should be made before the end of 2025. All journals and textbooks that publish anything about PCOS will be made aware of the new name and enter a transition period of five years, during which they’ll refer to the condition using its new name, “formerly known as PCOS”.

The “official sign-off” on the name will come from the World Health Organisation’s International Classification of Diseases, but Professor Teede said this could take a few years.

She said PCOS was an ill-fitting name, as it “does not reflect the broad range of health impacts”, so this change, no matter how complicated, was necessary. “The focus on ovarian cysts, which are not true cysts but rather eggs or follicles that have stopped growing, overlooks the impacts of this multisystem disorder, leading to confusion, missed and delayed diagnosis, and inadequate information provision and care,” Professor Teede said.

Education was “one of the big barriers” to providing effective care and early diagnoses. “This needs to be taught in high school, where adolescent girls are going through those changes in puberty,” she said.

Professor Teede said PCOS was “taught to be scary women’s business and just about infertility,” when “it should concern everyone”.

“Even in medical training, it’s only educated in obstetrics and gynaecology,” she said. “Dietitians and psychologists … never hear about it, even midwives, and it’s important in pregnancy.”

Suggesting better education could help protect young women, Professor Teede said the physical manifestations of PCOS could also be psychologically damaging.

Women with PCOS were at increased risk of depression, anxiety, obsessive-compulsive disorder and body dysmorphia.

“Accurate and timely diagnosis is critical,” Professor Teede said.

“Without answers for what they’re experiencing … these women can start to believe something is wrong with them.”

“That’s when we start to see those psychological features in full force.”

Those involved in the Monash-led global initiative hope a name change can help to reduce confusion surrounding PCOS, raise awareness for the condition, and lead to earlier, more effective diagnosis and management.