Polycystic Ovary Syndrome name change brings clarity to misunderstood condition

Polyendocrine Metabolic Ovarian Syndrome (PMOS) is a significant women’s health condition affecting around 170 million people worldwide. It is hoped changing the name from Polycystic Ovary Syndrome to PMOS will help GPs in diagnosing and treating the syndrome, which impacts weight, metabolic and mental health, skin and the reproductive system.

The name change was published in the Lancet and announced at the 28th European Congress of Endocrinology in Prague.

Endocrinologist and Director of the Monash Centre for Health Research and Implementation Professor Helena Teede spearheaded the fight for the name change, to better reflect the long-term endocrine disorder.

Professor Teede told InSight+ that the 14-year battle would not have been successful without the support of many women with lived experience of the condition who had suffered unnecessarily for decades from delayed diagnosis and inadequate treatment.

“It was co-led with patient advocacy groups and with an international global steering group,” Professor Teede said.

“It's been a long journey. There’s been a lot of research in this condition. We led the international guidelines in 2018 and in 2023 that are global and used in 195 countries. But it was really clear that we couldn't get that next step further without the name change.”

“The name change is necessary but not sufficient to reclassify the condition out from being primarily an ovary condition — which it's not — and away from being about ovarian cysts because there are no increases in abnormal cysts in this condition. 

“We are moving away from inaccuracy towards a more accurate description. This is a really important milestone, but it's not the end of the journey.”

New classification provides clarification for clinicians

Professor Teede hopes the name change will lead to better research and understanding amongst doctors, who are crucial to managing this lifelong condition.

“The problem of the historical classification of this condition has had really far flow on effects,” she said.

“You’d spend the first five minutes when you diagnose it saying you have a disorder called polycystic ovaries, but you don't have increased abnormal cysts on your ovary. And if you're an adolescent, we're not even going to look at your ovaries.”

“I just hope we get better at listening to women about this condition because it does have such profound broad impacts that we have ignored and not because we wanted to, but because every part of this whole is classified as a gynaecological disorder.”

“This changes everything in our world. It changes the funding for our research. It changes the healthcare provision. It changes the education. And whilst it's got better over time, GPs, doctors, cardiologists, dermatologists, and endocrinologists don't get enough education about this condition and the way it manifests.”

Early detection with general practice is crucial

A three-year transition process is now underway involving an international awareness campaign for health professionals, government and researchers, before PMOS is fully implemented in the International Guideline update in 2028.

Associate Professor Magdalena Simonis is Associate Professor with the Department of General Practise at the University of Melbourne, and the RACGP women’s health spokesperson.

She says this name change is pivotal, as early detection in general practice is crucial to improving long term outcomes. 

“This is a lifelong hormone disorder that needs lifelong management,” Associate Professor Simonis said.

“What this really means is that what was previously centred around the presence or absence of ovarian cysts is now being centred really around the condition being a chronic endocrine and metabolic disorder.”

“The fact that we are also now not expected to perform an ultrasound for any woman who meets any of the two criteria that can be attributed to this condition is also a breath of fresh air. What they found was that there's very little difference between those with multiple cysts and those without the multiple cysts and the presence or absence of the condition. 

“PMOS predisposes them to type two diabetes and dyslipidemia, obesity, health issues, long-term post-menopause, not just during their reproductive life. It also can have implications for their fertility.”

“If they have the other sort of secondary features of hypoandrogenism — the elevated androgen levels, which present as acne, excessive facial hair and body hair in places where you don't want it — it can affect their physical appearance and also their self-confidence. So during young adolescence, during their late teens and into young adulthood and into their later years, these can be really impactful for their confidence and for their psychological wellbeing.”

“Then we also have the menstrual irregularity and the hormonal shifts that occur with that, that some women are really sensitive to that, which can affect their moods.”

“So, I think that with the GP consultation now, we need to be asking ourselves when a woman comes in and says, ‘Oh, I just can't lose this weight and I'm gaining weight and I'm eating just as much as my friends do. I do five intense sessions of exercise a week. I measure what I eat and I'm still gaining weight.’ Well, we need to take another step back and think, could this be one of the features of Polyendocrine Metabolic Ovarian Syndrome rather than dismissing it and saying, `Oh, try a bit harder’.”

“We're talking about spending more time with the patient. One consultation won’t fix this. This is a lifelong condition that will change in its expression over the years and over the stages of life and that will all require different types of interventions which are primarily lifestyle to begin with.” 

Associate Professor Simonis said insulin resistance or increased insulin levels are a major driver of the hormone disturbances seen in PMOS.

“You have elevated insulin levels, which is common to almost everyone with this condition, even in slim women. So that's the other misconception, that you need to be overweight to have PMOS, but you don’t,” she said.

“It can occur in slim women and hyperinsulinemia exists in around between 70 to 90% of patients who are overweight and in around 30 to 70% of women who are lean. And so it has all these impacts. One of the significant points that I think stands out is the significance of insulin in hormone dysregulation and regulation.”

Professor Teede credits the Australian NHMRC for investing in a Centre of Research Excellence on this condition, which has helped bring about this worldwide name change.