Professor Helena Teede

A review of the evidence for the assessment and management of polycystic ovary syndrome (PCOS) has emphasised the significantly increased cardiovascular risk associated with PCOS.

Professor Helena Teede, lead author of the international PCOS guideline which is still in consultation draft form [link to guideline summary and recommendations here], told the limbic that more insight into the natural history of the condition revealed PCOS was a clear indicator of increased cardiovascular disease.

“So PCOS has now positioned itself along with gestational diabetes and preeclampsia in pregnancy as markers of significant longer term cardiovascular risk, that are not considered in any of the risk calculators or any of the populations at risk of heart disease.”

Professor Teede, director of the NHMRC Centres of Excellence in PCOS and in Women’s Health in Reproductive Life, said PCOS was a condition often identified early in life yet there was “no prevention or recognition or risk perception or strategies that are wrapped around it”.

She said critical work moving forward would look to incorporate the increased CVD risk associated with PCOS into relevant health practitioners’ awareness, global cardiovascular risk scores and guidelines.

Professor Teede said there had been a change in recommendations regarding diagnosis of PCOS since the 2018 guidelines with advances in the accuracy of anti-müllerian hormone (AMH) testing allowing for it to be used instead of an ultrasound in adults.

“Which is really important because if you’re someone in a regional area, you can still get access to blood tests. It’s lower cost, more convenient and better access.”

She said subfertility was a characteristic of PCOS and many women required fertility assistance, typically oral therapies.

“But what wasn’t appreciated before is that they have really high risk pregnancies, independent of their BMI. They have more preeclampsia, they have more gestational diabetes, they have a lot more complications.”

She said about 10-12% of women have PCOS, yet it was usually only recorded in hospitals at about 1-2%.

“We [health professionals] don’t even think it’s important enough to record it, even though that makes them a high risk pregnancy. So we need a much stronger recognition amongst obstetricians, midwives and women that when you come into pregnancy…you need much closer monitoring assistance and support and prevention.”

Professor Teede said compared to the 2018 guidelines, the evidence on the prevalence of mental health disorders with PCOS was overwhelming.

“But it really is important to recognise that in PCOS, part of this is actually related to distress from the condition. If you’re a young woman whose body shape and body size and body hair and cycles are different to your peers, it does cause distress.”

“And it affects many of the areas that are associated with femininity, with appearance, and self esteem and quality of life.”

The recommendations include that laser hair removal should be considered for people with PCOS given its potential to improve psychological symptoms.

“We’ve got the evidence, now we need to advocate for it because you can get it, for example if you transgender and you want to deal with excess body hair, it’s funded but if you have PCOS, it’s not. So there’s a disparity.”

New name for PCOS yet to come

Professor Teede said the genetic drivers of PCOS were basically reproductive and metabolic.

“So it’s really an endocrine condition, a problem of reproductive hormones and insulin resistance. which then drives the hyperandrogenism…it’s not an ovary syndrome. The fact is that ovaries are neither sufficient nor in isolation adequate for the diagnosis.”

“This guideline emphasises why we need to change the name, but there is a separate affiliated process to do so and the publications around that are coming out shortly.”

More inclusive and gender-neutral terminology has also been adopted in the guideline by:

• Increasing the use of gender-neutral terminology (e.g. adolescents, adults, individuals and those with PCOS), when gender is not central to the subject matter
• Using accessible language that is inclusive of persons with lower levels of health and/or PCOS literacy
• Increasing use of the term female, where biological sex is most relevant
• Retaining use of the term ‘woman/ women’ which where used, intends to encompass all genders affected by PCOS irrespective of how they choose to identify.

Awareness and education

Professor Teede said women don’t feel well served by health professionals which was frustrating considering that PCOS is twice as prevalent as diabetes.

“And part of the reason for that is, it’s a one-hour lecture under the women’s health O&G banner. So it’s very neglected in professional education, undergraduate and postgraduate…multiple health professionals need to be much better educated and much more aware of the condition,” she said.

As well, women had to be empowered to engage effectively with different health professionals at their various life stages.

She said the free Ask PCOS app [link here], available in multiple languages and already used by about 45,000 people around the world, provided evidence-based patient information, goal setting and tracking tools, checklists and care plans.

The evidence for the guidelines was synthesised from 55 systematic reviews and with collaboration between about 40 professional societies and consumer groups across 71 countries.

Sessions on the new guideline will be presented at upcoming endocrine society meetings in Australia and overseas.