Name change for PCOS under discussion

Polycystic ovary syndrome (PCOS) should be renamed to overcome the ‘misleading implication’ that it’s an ovarian or gynaecological condition only, say experts and patients.
 
New research, led by Monash University, has explored current awareness of the clinical features of PCOS, as well as its name, the potential for renaming the condition, and the pros and cons.
 
Results from the 2023 global survey of 7708 participants found 76% of health professionals and 86% of patients backed a name change, with alternative terms like ‘endocrine’ and ‘metabolic’ gaining support.
 
Lead author, endocrinologist and Director of the Monash University Centre for Research Excellence in Women’s Health, Professor Helena Teede, said PCOS is the most common endocrine condition in reproductive-aged women, yet its name does not reflect its broad range of health impacts.
 
‘The focus on ovarian cysts, which are not true cysts but rather eggs or follicles that have stopped growing, overlooks the impacts of this multisystem disorder, leading to confusion, missed and delayed diagnosis, and inadequate information provision and care,’ she said.
 
‘The research shows there is consensus that benefits will outweigh risks and will improve awareness, research, education and care.’
 
Professor Teede said a name change could raise awareness of the condition in general practice, increase the opportunity for early intervention and improve patient understanding.
 
‘Critically, this is not about criticising GPs or health professionals but about recognising the system deficits, including the name, and addressing these,’ she told newsGP.
 
‘There is more work that needs to be done but for GPs, one of the most important things is to get accurate information to patients because it is a complex condition and changes over the lifespan and is different between individuals.’
 
Associate Professor Magda Simonis, a GP with an interest in women’s health, said the motivation behind changing the name is understandable, as the term PCOS is an inaccurate representation of the disease.
 
However, she is concerned about the confusion it might cause when it comes to existing awareness, online searches, research projects and programs that use the name PCOS.
 
‘To pivot to a new name when you’ve got such a public awareness of a condition already… where does that leave everyone with the use of the term?’ she told newsGP.
 
‘In saying that, I understand the significance of going for a new name, because PCOS does not reflect the breadth of the disease and the chronicity of the disease, and the fact it’s an endocrine condition that affects so many women – the name does not encapsulate that.’
 
Associate Professor Simonis said while it would be good if there was a way to maintain the PCOS acronym while also providing a simple name that emphasises it is an endocrine disease, it is ‘a difficult task’.
 
But she also appreciates the approach by the university to have health professionals and stakeholders provide their thoughts.
 
GPs are being invited to share their input via the PCOS new name survey.
 
PCOS patient and advocate Lorna Berry says the PCOS community welcomed moves towards renaming the condition as ‘a long-overdue shift toward respect, clarity, and meaningful progress’.
 
‘The term ‘polycystic ovary syndrome’ is misleading, medically outdated, and emotionally invalidating,’ she said.
 
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endocrine conditions PCOS polycystic ovary syndrome women’s health