Source: Radio New Zealand (world)
An Australian researcher who led the process describes it as a 'landmark moment'. A medical condition affecting more than 170 million women worldwide has been renamed after researchers led a global process over 14 years to correct a misunderstanding.
Polycystic Ovary Syndrome (PCOS) – a hormonal and metabolic condition which can affect fertility, weight, skin, hair, mental health and long-term risk of diabetes and heart disease – has been renamed to Polyendocrine Metabolic Ovarian Syndrome (PMOS).
Unlike the name suggests, "true" ovarian cysts aren’t a feature of the syndrome and experts have spent years trying to untangle the confusion. Now, new research and action is here to clear the air.
Symptoms of PCOS are wide ranging and can include skin issues like acne. (file image) Unsplash / Fellipe Ditadi Sign up for Life, a weekly lifestyle and entertainment newsletter curated by RNZ's Life editors and delivered to your inbox every Saturday.
A study, published on Tuesday in JAMA Internal Medicine, of more than 1200 Finnish women found those with PCOS did not have a higher rate of abnormal ovarian cysts than those without the condition. Data from the Finnish Women's Health Study (WENDY), collected between 2020 and 2022 from participants aged 33 to 37, compared ultrasounds from 223 diagnosed women with 1012 without the syndrome.
Researchers noted limitations, including a predominantly white European cohort and ultrasounds performed on random cycle days by five different clinicians. PCOS vs ovarian cysts It is not clear what exactly causes PCOS/PMOS.
However, Victoria University of Wellington public health associate professor Melanie Gibson says elevated levels of the androgen hormones lead to more undeveloped eggs forming in fluid‑filled sacs called follicles — often incorrectly labelled as cysts.
Victoria University of Wellington public health associate professor Melanie Gibson. Supplied / Gerry Keating Benign or pathological noncancerous ovarian cysts are different, Gibson says, because they may cause pain or require surgical intervention. “You can see why it's so confusing for everyone involved, because it's right there in the name,” she says.
“And so of course you're going to focus on that rather than treating PCOS like a whole of body condition that affects people across the life course and in different ways and different stages and affects individuals differently.” The misunderstanding is widespread.
A 2023 global survey of 3000 respondents — co‑authored by Gibson and published in The Lancet — found 85 percent of patients and 62 percent of clinicians associated PCOS with ovarian cysts. However, an ultrasound is not required for diagnosis, according to the 2023 International Guidelines.
After excluding other possible illnesses, patients only need to have two of three criteria: • irregular periods (more or less frequent than monthly), • high androgen hormone levels (checked via a blood test or physical signs like hirsutism or hair loss), • 20 or more follicles per ovary (checked via ultrasound or anti-müllerian hormone blood test as a substitute for an ultrasound).
What can patients expect from the name change? Attempts to change the name since the 90s have stalled due to lack of consensus and stakeholder engagement, The Lancet study authors noted, but there was increasing support for a name change.
Announcing the change at an international endocrinology conference in Prague on Tuesday night, Australian co-author Helena Teede called it the largest initiative to change the name of a medical condition, taking 14 years of collaboration between experts and those with lived experience.
Helena Teede is the director of Monash Centre for Health Research Implementation, Monash University.
“The agreed principles of the new name included patient benefit, scientific accuracy, ease of communication, avoidance of stigma, cultural appropriateness and accompanying implementation,” said Teede, director of the Monash Centre for Health Research & Implementation and an endocrinologist at Monash Health.
“This change was driven with and for those affected by the condition and we are proud to have arrived at a new name that finally accurately reflects the complexity of the condition.
“Make no mistake, this is a landmark moment that will lead to desperately-needed worldwide advancements in clinical practice and research.” Gibson, who previously worked under Teede, says this will help shift the emphasis from cysts and grow understanding of the syndrome’s complexity.
“PCOS can have effects on many different parts of people's health and well-being.
So this means that management of PCOS should always start with each individual's key concern, managing the symptoms that affect their daily life, reducing long-term health risks so that people can live well with PCOS.” The new name will be implemented in the 2028 International Guideline. • Gibson has helped develop the AskPCOS App, which helps women who are experiencing symptoms but have no diagnosis, and the PCOS Question Prompt List – to help diagnosed women formulate questions to ask their GP.
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