Lucy Ogden-Doyle was only 14 when she learnt she may develop fertility problems. It was distressing news for someone who went to see her GP about irregular periods.
Her doctor said she might have a hormonal condition called polycystic ovary syndrome (PCOS) and she should drop five kilograms – despite then being 52 kilograms and 172 centimetres tall – to “pre-empt” weight gain, a symptom.
“It was quite a dramatic thing to tell someone so young that they may be infertile and to lose weight, which would have made me underweight,” Ms Ogden-Doyle, now 24, said.
“Two years later I had tests and I do have PCOS but I’m not showing the symptoms like excess hair or extra weight so, while it has been a negative experience, right now I’m not letting it affect me.”
The arts student is among one in five women diagnosed with PCOS, a deeply stigmatising condition.
A widening of the definition in 2003 led to a dramatic increase in cases, from 5 to 21 per cent.
In an opinion article in the latest British Medical Journal, Australian researchers argue the expanded definition had inadvertently led to overdiagnosis, and therefore too much treatment and even harm.
Lead author Tessa Copp, a PhD student at Sydney University, said many women were being “given a lifelong disease label” in their teenage years when symptoms such as acne and irregular periods overlapped with signs of puberty.
She referred to three studies that found the prevalence of PCOS by age decreased rapidly after 25, suggesting the symptoms may be transitory for some women.
“A lot of my friends had it and were feeling quite dissatisfied because there’s no cure, nothing you can do, except to undergo treatments that focus on alleviating symptoms,” she said.
“Some cases are severe and they will benefit from the label, but women with milder symptoms may experience harm from the overdiagnosis and overtreatment.”
The authors said women diagnosed with PCOS had higher levels of depression, anxiety, poorer self-esteem, negative body image, disordered eating and decreased sexual satisfaction.
They said it was unclear whether these impacts were due to the condition, its symptoms, or from the psychological effect of being labelled a PCOS sufferer.
“It’s associated with infertility, hypertension and type 2 diabetes, so it labels women as abnormal but the consequences are not the same for everyone,” Ms Copp said.
The authors argue that, given the uncertainties, the risk of psychological harm and the impacts of applying a one-size-fits-all diagnostic criteria to a wide-ranging set of symptoms, it was important for doctors not to rush diagnosing women.
“We need better understanding and research to characterise the benefits and harms of diagnosis and treatment for women with both severe and milder symptoms,” Ms Copp said.
“Instead of diagnosing women in adolescence, note they’re at risk, follow up with them over time and use treatments that target the symptoms.”
Call to action
The articles comes as influential health groups, including the Consumers Health Forum and the Royal Australasian College of Physicians, launch a call to action to address overdiagnosis in general and “the problem of too much medicine”.
In an initial statement via a Wiser Healthcare collaboration, they said there was an urgent need to develop a national action plan.
“Expanding disease definitions and lowering diagnostic thresholds are recognised as one driver of the problem, and the processes for changing definitions require meaningful reform,” it said.
Dr Ray Moynihan, from Bond University and a Wiser Healthcare member, said the problem of too much medicine was driven by many factors, including the best of intentions.
“PCOS appears to be a strong example of the problem of expanding disease definitions or lowering diagnostic thresholds that are potentially labelling too many people,” he said.
PCOS occurs when a woman’s ovaries or adrenal glands produce more male hormones than normal.
It is the most commonly diagnosed endocrine disorder in reproductive aged women, and is associated with an increased risk of diabetes, metabolic syndrome, heart disease, high blood pressure and poorer psychological wellbeing.