Young women's inconsistent perceptions around their diagnosis of the hormonal condition polycystic ovarian syndrome (PCOS) could be causing them unwarranted concern about their fertility, new research has found.

The study was Australia’s first to quantify PCOS in women aged 16-29 and recruited participants via Facebook. There have been similar studies in this area, but this is the first to specifically target this age group. Three hundred young women took part in the study.

Eight per cent of respondents said they had been diagnosed with the condition, which is the most common endocrine abnormality in reproductive-aged women.

This research was undertaken as part of the Young Female Health Initiative (YFHI) and Safe-D studies, which are led by University of Melbourne and Royal Melbourne Hospital Professor John Wark and the University and Royal Women’s Hospital Professor Suzanne Garland.

PCOS is a complex hormonal condition and symptoms can include irregular periods, no periods, excessive hair, hair loss, acne, mood changes and reduced fertility. A diagnosis of PCOS in adolescent females can be difficult to make as these symptoms can reflect, at least in part, normal physiological changes of puberty, or can overlap with a diagnosis of PCOS.

Using US National Institutes of Health (NIH) criteria the study, just published in the Australian and New Zealand Journal of Obstetrics and Gynaecology, found that 12 per cent of respondents had PCOS. The prevalence of self-reported PCOS was eight per cent, but only 35 per cent of those fulfilled the NIH criteria. Those who self-reported PCOS were also more likely to report depression than those who didn’t have the condition.

To complicate matters, the NIH criteria are one of at least three sets of criteria in use, none of which is considered to be a ‘gold standard.’

“The lack of consistent and accurate diagnosis of PCOS in young women potentially leads to over-diagnosis,” the study found. “This creates unnecessary fears of health complications particularly infertility. Therefore, we recommend the development of standardised criteria with set parameters that allow for better diagnosis.”

Study lead author, Dr Chitra Varanasi, of the Royal Melbourne Hospital and University of Melbourne, says the lack of diagnostic clarity caused many young women with PCOS, to worry unnecessarily about being infertile, even though PCOS is highly manageable and may not always affect fertility.

Dr Varanasi said standardised criteria would make diagnosis more accurate and address the stigma that still surrounds PCOS. “It shouldn’t have such a burden,” she said. “Just thinking they were going to be infertile gave young women anxiety and depression. It is a fertility issue but not necessarily for everyone.”

Murdoch Children’s Research Institute and Royal Children’s Hospital are partners in the research.

Study co-author Dr Asvini Subasinghe, from the Royal Women’s Hospital and MCRI, says it is not surprising that those who reported PCOS were more likely to feel depressed than those who didn’t. “Improved diagnosis and clarity around the condition could help alleviate this,” she said.