It’s time to talk about PCOS
30 September 2021
Delays in diagnosis, limited treatment options and low research funding characterise the current experience of people living with polycystic ovary syndrome.
I spent three years being told (and believing) that the symptoms affecting my quality of life were ‘just due to stress’. It took quite a few doctors and medical tests to confirm that I actually had polycystic ovary syndrome.
What is polycystic ovary syndrome?
Polycystic ovary syndrome, also known as PCOS, is the most common hormonal condition among women of childbearing age worldwide, affecting anywhere between 4% and 20% of that group. It is characterised by irregular periods, hormonal imbalance and a ‘polycystic’ appearance of the ovaries – meaning they become enlarged and contain many fluid-filled follicles. Common symptoms include weight gain, loss of hair from the head, severe acne and excessive hair growth on the face and body.
I had never heard of PCOS until I was diagnosed, but quickly discovered that many people in my life had been directly or indirectly affected by it.
Delays in diagnosis
There is no definitive test to diagnose polycystic ovary syndrome – diagnosis relies on a combination of tests, and diagnostic criteria vary between countries. A global survey of people living with the syndrome found that almost half saw at least three healthcare professionals before being diagnosed, and one in three waited more than two years for their diagnosis. Symptoms may be misinterpreted as signs of stress, unhealthy lifestyle choices or young age.
A global survey of people living with the syndrome found that almost half saw at least three healthcare professionals before being diagnosed.
Despite my best efforts to signal that something really was wrong, it took an eagle-eyed dermatologist seeing past my ‘stress acne’ for me to be referred to a specialist for diagnosis. My experience is not unique. In fact, a study by YouGov and the Get Lippy campaign found that women, transgender men and non-binary people were five times more likely to report that they were not listened to when seeking care for reproductive health: 20% felt that their concerns were viewed as ‘trivial’ and 23% were disappointed with the outcome of their consultation.
Limited treatment options
There is no cure for PCOS, so treatment focuses on managing symptoms. The most common approaches include the contraceptive pill and lifestyle changes (with an emphasis on weight loss). In more extreme cases, ‘off-label use’ of medications commonly prescribed for diabetes and heart failure may be offered.
Considering the prevalence and burden of PCOS, these treatment options are simply not enough. Hormonal contraception is not suitable for everyone and weight loss can be difficult for people with insulin resistance, which is thought to be both a symptom and a driver of the syndrome. Let’s not forget that when treatment options are limited and symptoms hinder everyday life, people may become more vulnerable to predatory health scams.
There is no cure for PCOS, so treatment focuses on managing symptoms. Considering the syndrome’s prevalence and burden, these treatment options are simply not enough.
The need for research
Studies on PCOS are typically underfunded, despite the syndrome’s prevalence and known links with diabetes, cardiovascular disease and certain types of cancer. A better understanding of the causes and mechanisms of PCOS not only would improve millions of lives, but may also help reduce the burden of other conditions on our health systems.
Research has tended to focus on PCOS as a cause of infertility, meaning most studies that inform clinical guidelines and health policy are based on data from ‘women of childbearing age’. If we want equitable and person-centred care for PCOS, we must examine the syndrome’s impact on all people with ovaries, irrespective of their gender identity or desire to have children.
As PCOS Awareness Month comes to a close, I’m more aware than ever that we must continue to have these conversations all year round. With so many of us affected, directly and indirectly, it’s time to change the status quo.