Diagnostics
PCOS testing and the need for better guidance
Women with long term conditions such as polycystic ovary syndrome are often left feeling abandoned and alone. Our healthcare system could do so much more to recognise – and therefore mitigate – their suffering. Dr. Anne Connolly discusses the latest advances in diagnosis and the need for better guidance.
For polycystic ovary syndrome (PCOS) – the most common endocrine disorder, experienced by up to 13% of women of reproductive age – timely detection can be the difference between mild and severe consequences. There is significant variation in the kind and severity of symptoms that patients experience. But too often, women in the UK aren’t diagnosed in time to allow them the information required to make lifestyle changes or provide treatments to reduce symptoms. This is because of reasons ranging from low awareness of those symptoms, lack of NICE guidance, and over reliance on outdated methods of detection. A simple blood test for Anti-Müllerian hormone
(AMH) recently received CE-mark approval for a claim extension, making it the first blood test that can be used to detect a key marker of PCOS. This signals a huge milestone in making PCOS
diagnosis easier and more accessible. But this approval is just the first step in a long journey to giving women the answers they need, when they need them. For this test to make a difference to these women’s lives, there needs to be a wholesale shift in how we and our healthcare systems approach PCOS.
PCOS – an underdiagnosed endocrine disorder PCOS is a long-term condition, and people living with it can experience very different kinds of symptoms, at very different levels of severity. PCOS causes hyperandrogenism which in the short term can lead to acne and facial hair growth. While these are both fairly common symptoms in young women, it can be distressing and have a serious impact on self-esteem at an
already anxious time in life. In the medium term, PCOS can lead to weight gain or difficulty losing weight, or even fertility problems – and for women who do conceive, they are at higher risk of developing gestational diabetes. Longer-term, it can cause challenges such as insulin resistance and diabetes. It can also increase the risk of endometrial cancer. In my practice, the presentation of these early symptoms is what drives most visits for PCOS, but I also know that often patients are treated for those symptoms without investigations into their underlying cause. The earlier PCOS can be diagnosed, the more we can do to help patients manage their symptoms and reduce both the physical consequences and emotional impact of those medium and long-term symptoms. However, getting this early diagnosis can be
challenging, due to the wide range of presenting symptoms and the complex pathways that we can send patients down to reach a diagnosis. This means that PCOS is often diagnosed late, making it harder for patients to make crucial interventional lifestyle changes that could alter the course of their condition. While PCOS is typically labelled a gynaecological or ‘women’s health’ condition, it’s actually a long-term endocrine condition and should be recognised – and managed – as such. Insulin resistance should be a key driver of the conversation around the importance of diagnosing PCOS early so that pre-diabetic and diabetic symptoms aren’t left at risk of getting worse. While weight gain is a common symptom of PCOS, it’s harder to lose weight for those who are insulin resistant, and so managing symptoms can become harder the longer the condition remains undiagnosed. We can look at asthma as a helpful comparison: it’s another long-term condition which can’t be cured but can be managed with appropriate intervention. Insulin resistance as a result of PCOS can’t be stopped, but it can and should be managed effectively. We should
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