Relevance: primary · Type: event
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After more than a decade of global consultation, polycystic ovary syndrome has been renamed polyendocrine metabolic ovarian syndrome.
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Polycystic ovary syndrome affects one in eight women.
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Polycystic ovary syndrome affects an estimated 170 million women worldwide.
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The renaming of the condition was published in the Lancet and announced at the European Congress of Endocrinology in Prague on Tuesday.
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The renaming followed 14 years of collaboration between international societies and patient groups across six continents.
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Prof Helena Teede, director of Monash Centre for Health Research and Implementation in Melbourne, spearheaded the renaming effort.
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Confidence90%
Experts including Helena Teede say the term “polycystic” in PCOS contributed to delayed diagnosis and inadequate medical care.
Helena Teede, professor of endocrinology
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Confidence90%
Prof Helena Teede said "the term PCOS didn’t capture the ‘multi-system burden that people with this condition have suffered’, and that it ‘directs attention to only one organ’."
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PMOS is intended to better reflect the condition’s nature, affecting the reproductive system, metabolism, and risk of diabetes and cardiovascular disease.
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The first thing Maddy Mavrikis was told by her GP when diagnosed with PCOS at 15 was that she would probably never have children.
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Maddy Mavrikis consulted her doctor for irregular periods, and a blood test showed she had high levels of androgens.
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High androgen levels explained Maddy Mavrikis’ symptoms including acne and excessive hair growth.
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Ultrasound in Maddy Mavrikis’ case showed no polycystic ovaries, although her GP insisted she would eventually develop them.
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Her doctor found she had insulin resistance, which affects about 85% of women with PCOS.
Helena Teede, professor of endocrinology
Relevance: supporting · Type: quote
Confidence90%
Prof Helena Teede said "there are no abnormal cysts in PCOS."
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Doctors initially thought of PCOS as a disease of the ovaries when it was named in 1935.
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Research has found PCOS is caused by an imbalance of insulin and androgen hormones.
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Hormone imbalance in PCOS affects metabolic, mental, skin and reproductive health, and increases risk of diabetes and heart disease.
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Academic articles have discussed renaming PCOS since 1995.
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A 2012 forum on PCOS run by the US National Institutes of Health recommended renaming the condition.
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The renaming effort involved 56 medical and patient societies across all relevant disciplines worldwide.
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Lorna Berry has advocated for better education about PCOS for more than 25 years and served as a global consumer representative in workshops deciding on the name change.
Lorna Berry
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Lorna Berry said "I’ve felt an equal in discussions with medical experts deciding on the new name."
Helena Teede, professor of endocrinology
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Confidence90%
Prof Helena Teede said "we needed involvement from all groups to own the new name in all regions and drive change."
Helena Teede, professor of endocrinology
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Confidence90%
Prof Helena Teede said "While ‘reproductive’ may be a more accurate direct term to cover all of the abnormalities in the ovary, endometrium and reproductive health during pregnancy, it also carries very significant stigma."
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PCOS causes infertility, acne, excessive hair growth, obesity and irregular periods.
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Confidence80%
Up to 70% of women with PMOS don’t know they have it and go undiagnosed.
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A study published Monday found that many cysts in PCOS are actually arrested follicles.
Relevance: supporting · Type: background
Confidence90%
The name change was pushed by 50 academic, clinical and patient organizations following a global survey.
Iman Saleh, OB/GYN and director of obesity medicine
Relevance: supporting · Type: quote
Confidence90%
Dr Iman Saleh said "PCOS had been treated primarily as a gynecological disease focusing on ovarian cysts."
Iman Saleh, OB/GYN and director of obesity medicine
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Confidence90%
Dr Iman Saleh said "If you didn’t have a cyst or the ovary was not enlarged, you could be misdiagnosed or spend years without a diagnosis."
Iman Saleh, OB/GYN and director of obesity medicine
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Confidence90%
Dr Iman Saleh said "Now we can focus on long-term impacts of these hormonal fluctuations beyond fertility and menstruation issues."
Iman Saleh, OB/GYN and director of obesity medicine
Relevance: supporting · Type: quote
Confidence90%
Dr Iman Saleh said the new name encourages doctors to look beyond the ovaries to hormonal and metabolic dysfunction affecting metabolism, weight, reproduction, skin and mental health.
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Patients with PMOS often struggle with weight and metabolic health and face increased risk of high blood pressure and diabetes.
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