Push to change polycystic ovary syndrome's name to better reflect condition
PCOS can cause a variety of symptoms including hormonal imbalances, excessive androgen levels and irregular periods, and is a leading cause of infertility.
But 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.
The survey, which has garnered more than 6,500 responses so far, offered three different approaches including finding a generic name; a name that better reflects the pathology and symptoms; or keeping the acronym PCOS but changing the words each letter represents.
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.
"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," she said.
The renaming initiative is driven by the nationally funded Centre for Research Excellence in Women's Health in Reproductive Life, at Monash University.
Women's health professor Helena Teede said PCOS was "one of the most neglected, poorest understood conditions".
"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."
Amy Harrison, 47, was diagnosed almost 25 years ago.
Living with both PCOS and endometriosis has affected her daily life in different ways.
"PCOS provides more sharp stabbing pains, but it also affects your digestive system, how your bladder and bowels work, nausea, pain [and] gives me migraines."
Ms Harrison said it had been challenging explaining how it would impact her 15-year-old daughter, Emma, who was going through her own PCOS and endometriosis diagnosis journey.
"The name itself doesn't actually explain how the symptoms work and how they interact with her body," Ms Harrison said.
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".
"A lot of clients have said to me the title can be a little bit confusing," she said.
"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."
Professor Teede said around 8,000 people over six years had been surveyed on the topic.
Professor Teede said the current survey, which had more than 6,500 responses so far, offered "three basic choices":
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.
"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," she said.
"There's a strategy that goes across about 15 different ways of implementing. But the ultimate one is changing the name.
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And a parent is filling out paperwork to withdraw their child from a system that once promised safety and belonging. None of this is inevitable. But we won't read about the children who were protected from bullying or the growing number of people attracted to teaching as a profession unless we act — with clarity, courage, imagination, and a renewed commitment to the core mission of schooling: to provide a safe place for children to learn, to grow, and to be. - Geoff Riordan is an emeritus professor, a former school teacher, high school assistant principal and the former Dean of Education at the University of Canberra. In the mid-2000s, with Andrew Gonczi, he conducted major reviews of student welfare and discipline policy for the New South Wales Government, covering both public and non-government schools. He has held senior academic leadership roles and continues to advise on education practice, policy and student wellbeing.
