As a teenager, Lorna Berry had struggled with her weight and irregular menstrual cycle but it wasn’t until her twenties that she knew something was wrong.
Ms Berry is one of about 500,000 Australian women has been affected by polycystic ovary syndrome.
At 25, she decided she was ready for her first child, but it would take another two years before one would finally arrive, which was an unusually long time for someone in their twenties.
Ms Berry spent another two years hopping from doctor to doctor before landing on an answer.
“I fought for my PCOS diagnosis,” she said.
“Living with PCOS is challenging enough, but the struggle to find reliable information feels like an uphill battle.”
While it is the leading cause of female infertility, it is often misclassified as a reproductive disorder even though it affects other areas of wellbeing like weight and mental health and can lead to diabetes and heart disease.
As a result, the healthcare expenses associated with the condition cost about $800 million a year.
But a worldwide partnership led by Monash University has created international guidelines on PCOS that hopes to support women living with the condition.
The 2023 International Polycystic Ovary Syndrome Guideline, an update on its 2018 iteration, distils information from hundreds of experts and thousands of health professionals across 71 countries into 254 recommendations and practice points.
Leading academic on the PCOS guidelines Professor Helena Teede said the new research busts myths and hopes to reduce the stigma around the condition.
“Australians are exposed to an environment that drives rapid weight gain due to failures in policy, regulation and financial constraints with women with PCOS at even higher risk,” she said.
This can limit women’s access to therapy and fertility services which can be especially harmful to those from under-served populations.
For example, general practitioners would dismiss Ms Berry or tell her to lose weight during her diagnosis journey.
When she found it difficult to keep her weight down, one doctor told her “losing weight was just a state of mind.”
“It’s disheartening when every corner you turn, there’s someone trying to sell a miracle cure,” she said.
By offering advice on timely diagnosis, optimal models of care and accessible information for patients and healthcare providers, the new guidelines hope to improve the lives of women who live with PCOS.
“Empowering women so they can advocate and educate doctors and other health professionals is of utmost importance. We need to make sure that the next generation doesn’t go undiagnosed and unsupported,” Ms Berry said.
(Australian Associated Press)