A New Chapter for a Misunderstood Condition
After nearly a century of misdiagnosis, a condition that affects an estimated 500,000 Australian women is set for a significant name change. Polycystic Ovary Syndrome (PCOS), which has long been associated with the ovaries and cysts, will now be officially recognized as Polyendocrine Metabolic Ovarian Syndrome (PMOS). This change marks a major victory for reproductive health advocates and aims to address the confusion surrounding the disorder’s impact on the body.
Melbourne resident Lorna Berry was diagnosed with what is now known as PMOS at the age of 32, almost two decades after she first experienced symptoms as a teenager. She was part of a group of Australians who campaigned for over 14 years to have the name changed.
“It is a long time between 13 and 32, but nobody questioned it. There were no serious questions, and I wasn’t diagnosed until after I had my first child,” Berry shared with Nine.com.au.
“This isn’t for me, but my daughters and their daughters, and the women that haven’t even been born yet. With the introduction of the word metabolic, it sort of eliminates the confusion around the origin of it and the management.”
The Evolution of Understanding
Since PCOS was first introduced as a medical term in 1935, diagnosis and treatment have primarily focused on the ovaries and cysts. However, after nearly 100 years of medical progress, it has become clear that this hormonal or endocrine disorder can affect multiple parts of the body, not just the ovaries.
Health professionals have identified that the old name failed to reflect the broader health risks associated with PMOS, including diabetes, heart disease, fertility issues, pregnancy complications, higher weight, and endometrial cancer.
Berry, along with fellow Monash advocates Helena Teede and Jillian Tay, conducted extensive research that highlighted the challenges of misdiagnoses, lack of awareness, and poor treatment plans.
“This is to start the next chapter – changing the name is not going to fix everything right now,” said Professor Helena Teede, an Australian endocrinologist and director of the Monash Centre for Health Research and Implementation.
“It allows us to move on into a much broader way of researching, paving the way to better treatment, better medication, faster diagnoses. It won’t happen overnight, but we really do encourage women to be empowered to speak to their GP and have more evidence-based discussion and understanding of the condition.”
Public Support for the Change
According to Monash-led research, 86 per cent of women with the disorder and 76 per cent of health professionals supported the idea of renaming PCOS to better reflect its condition. Patients around the world were also invited to share their thoughts on what the new name should be through a survey.
The change was formalized this week at the European Congress of Endocrinology. It will involve a three-year transition period before PMOS is added to the 2028 International PCOS Guideline, which is used in 195 countries.
A Call for Empowerment and Awareness
Berry emphasized that many women with PMOS symptoms had been ignored by their doctors, told to lose weight, or advised to come back when they wanted to fall pregnant. This often led to long delays in diagnosis or pain management. Some patients were even wrongly told they would be unable to have children.
“We need to not treat the disease as though it is something people choose to control or not control,” she said.
“Then you can eliminate that old-school mentality of just being told to follow a diet and lose weight. Because early intervention, as with everything, is key.”
Resources and Further Information
For more information about PMOS and the ongoing research, visit the Monash Centre for Health Research and Implementation.
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