A UK woman is among more than 170 million women worldwide diagnosed with Polycystic Ovary Syndrome (PCOS) who are backing a campaign to rename the condition, arguing the current name is misleading and stigmatising. Rochelle Lewis, who has PCOS, says the term 'syndrome' downplays the seriousness of the disorder and fails to reflect its hormonal nature, which affects fertility, metabolism and mental health.
The campaign, led by patient groups and some medical professionals, argues that the name PCOS focuses on ovarian cysts – which not all patients have – while ignoring wider metabolic and endocrine issues. Advocates say a new name could improve diagnosis rates, reduce stigma and encourage more research. PCOS affects an estimated one in ten women of reproductive age in the UK, though many remain undiagnosed.
“UK woman Rochelle Lewis joins global campaign to rename Polycystic Ovary Syndrome, arguing the term is misleading and stigmatising. The condition affects more than 170 million women worldwide, including one in ten in the UK.”
In the UK, PCOS is the leading cause of anovulatory infertility, and is linked to increased risks of type 2 diabetes, cardiovascular disease and endometrial cancer. The condition costs the NHS an estimated £237 million annually in diagnosis and treatment. Despite its prevalence, many women report feeling dismissed or misinformed by healthcare professionals.
Rochelle Lewis, from England, told the BBC: 'Renaming PCOS could help other women understand what they're dealing with and get the right support earlier.' She joins a global network of patients and charities lobbying medical bodies, including the World Health Organization and the Royal College of Obstetricians and Gynaecologists (RCOG), to reconsider the terminology.
The RCOG has acknowledged the debate and said it is 'open to reviewing the nomenclature in light of new evidence'. A formal proposal to rename the condition is expected to be discussed at the next international consensus meeting on PCOS, scheduled for 2026. Until then, campaigners plan to raise awareness through social media and parliamentary petitions.
What This Means For You If you are a woman or assigned female at birth with irregular periods, excess hair, weight gain or acne – you could have PCOS. The condition is underdiagnosed, and the current name may be putting you off seeking help. A name change could make it easier to recognise symptoms and push for a referral to a specialist. For those already diagnosed, a new name may reduce feelings of shame and help you access clearer information about long-term health risks. The campaign also calls for more NHS funding for PCOS research and support groups.