A global study, led by Monash University in Melbourne, is renaming the women’s health condition affecting 170 million women worldwide.
Polycystic Ovary Syndrome or PCOS, will now be known as Polyendocrine Metabolic Ovarian Syndrome or PMOS.
The study says the new name will help health professionals recognise symptoms, direct new areas of research and affirm the experiences of people with PMOS.
The 10-year-long effort consulted over 22,000 people from six continents, and collaborated with universities in the Netherlands, India, England, the United States of America, China and Finland.
The study found that the incorrect naming of the syndrome has delayed diagnosis, with up to 70% of affected individuals remaining undiagnosed.
The study changes ‘Polycystic’ to ‘Polyendocrine Metabolic’, reflecting the syndrome’s complex hormonal nature and removing the emphasis on ovarian cysts in diagnosis.
The Centre for Women’s Health Research’s Professor Deb Loxton, at the University of Newcastle, says that some people may be confused by the name change, but it’s important to reflect women’s research and experience.
“Anything that helps people understand what’s going on for women and within their bodies when things go wrong is a good thing.”
Dr Loxton says this is a nice example of how research informs the way that general practitioners view syndromes and improves care outcomes.
The disorder is characterised by changes in hormones, which can impact menstrual cycles, weight, metabolic function, mental health, skin and fertility.
Per the study, people with the syndrome have higher rates of type 2 diabetes, obesity, fatty liver and cardiovascular disease, which all benefit from early intervention and prevention.
Emma Gulliford, 26, was diagnosed with PMOS at 15, and says the name change reduces the stigma of the syndrome.
“It was so hard when explaining to people that I had PCOS and then following that up with the fact that I had the hormonal characteristics and not the cysts.”
Emma says she was dismissed by doctors who didn’t recognise that weight gain was one of the many symptoms of the disorder.
“The frustration around being told to just lose weight and symptoms will subside is diabolical, considering that weight gain is a symptom.”
Emma says the name change will hopefully shift practitioners’ focus and provide patients with proper and adequate care.
The name change will have a three-year transition period of international education and awareness campaigns for health professionals, governments, and researchers.
The new name will be implemented in international guidelines in 2028.
The full study is published in The Lancet here.
(Featured Image: PCOS renamed to improve diagnosis and treatment. PEXELS)
