News
Survey calls for renaming of PCOS to better reflect condition

A global survey is underway to rename polycystic ovary syndrome (PCOS) to better reflect the condition and its impact on millions of women worldwide.
PCOS can cause a variety of symptoms including hormonal imbalances, excessive androgen levels – male hormones also produced in smaller amounts by women – and irregular periods, and is a leading cause of infertility.
The name has been labelled misleading, as research has confirmed the “cysts” on the ovaries are actually small fluid-filled sacs – underdeveloped egg follicles not released as expected during the menstrual cycle.
Women’s health professor Helena Teede said PCOS was “one of the most neglected, poorest understood conditions”.
She said: “It’s not just about the ovaries, it’s actually a hormonal condition.
“As a clinician, what I was seeing was the condition wasn’t being diagnosed, getting appropriate attention, prevention or treatment, research or education, and it was really challenging for those people who are affected.”
The renaming initiative is driven by the nationally funded Centre for Research Excellence in Women’s Health in Reproductive Life at Monash University.
The current survey, which has garnered more than 6,500 responses so far, offers three different approaches: keeping the acronym PCOS but changing the words each letter represents; creating a new name that better reflects the pathology and symptoms; or finding a generic name.
Once a consensus is reached, the ultimate goal is to have the name changed in the International Classification of Diseases.
Caitlin Videon was diagnosed with PCOS when she was 16.
She experienced a swathe of symptoms, including excessive hair growth, weight gain, depression and suicidal ideation.
After living with PCOS for two decades, the 36-year-old – who has also been diagnosed with endometriosis and adenomyosis – said trying to explain the condition was difficult.
She said: “I’ve even struggled to articulate it to doctors who have as part of their bio they’re well-versed in female reproductive conditions and issues.
“The name change will help capture how significant and intricate the disease can be when we’re talking about the entire female body.”
Riverland-based accredited dietician Felicity Morrell said she saw women every week with PCOS who were “just banging their heads against the wall with conflicting information and unsure of where to go”.
She said: “A lot of clients have said to me the title can be a little bit confusing.
“I think having a title that gives a better indication as to the scope of issues these ladies are trying to deal with could be really helpful.”
The global survey is open until the end of August.
Professor Teede said there was already a consensus from those working in the field that the name needed to change, and there was no scenario where the name change would not happen.
She said: “The aim is to finish the formal process by the end of the year and then to look at the dissemination strategies early next year.
“There’s a strategy that goes across about 15 different ways of implementing. But the ultimate one is changing the name.
“We are very excited, especially on behalf of those who are affected, and really looking forward to the positive changes that will come because of it.”
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