Why a Name Change for PCOS Could Change Everything for Millions of Women
For Rochelle Lewis, the path to a diagnosis was long and painful. She spent years grappling with unexplained pain, excessive facial hair, and bloating before finally learning she had polycystic ovary syndrome (PCOS) — a condition that, she was told, could threaten her chances of becoming a mother. “It was absolutely devastating,” she recalls.
Lewis is one of more than 170 million women globally living with PCOS, a hormonal disorder marked by elevated levels of male hormones. She received her diagnosis in February of last year — a moment she describes as “a long time coming” after years of symptoms and inconclusive tests.
“When you grow up with a vision of your life, and then you're told the one thing you want most likely won't happen — it's crushing,” said Lewis, now 31 and based in Birmingham. She was eventually able to conceive her son, now three months old, and the experience inspired her to start her own wellness business.
Earlier this month, the International PCOS Network announced a significant change: the condition would be renamed from PCOS to polyendocrine metabolic ovarian syndrome (PMOS). The goal, according to the network, is to better reflect the condition’s systemic nature — involving metabolism and the endocrine system — and to improve diagnosis and treatment.
For Lewis, who began shuttling between doctors around age 18, the name change could be a gateway to faster diagnoses for other women. But she remains skeptical about whether it will lead to broader systemic shifts. “You get told you have PCOS and then you're left to figure it out on your own,” she said.
In the UK, the NHS reports that PCOS affects up to one in 10 women, with symptoms ranging from irregular periods and weight gain to excess hair growth. The condition is also linked to higher insulin levels and an increased risk of type 2 diabetes later in life.
Kate Morris, a volunteer and former trustee at the charity Verity PCOS, welcomed the rename as “momentous.” Morris, who was diagnosed at age 19 after a frustrating search for answers in the 1980s, said the old name was misleading. “When I meet a new patient, one of the first things I tell them is the name is nonsense. This isn't just about your ovaries — that's one of the biggest dangers,” she said.
According to Morris, the new name could empower patients to demand specialist referrals, particularly to endocrinologists who understand the metabolic and hormonal dimensions of the disorder. “It gives patients the leverage to say, ‘It's in the name — what's happening to me is metabolic and endocrinological,’” she explained.
Shireen Forster, diagnosed at 18, founded LaserMeOut in Birmingham after struggling with excessive hair growth herself. She sees the rename as a crucial step toward recognizing PCOS as a full-body issue. “This is not just cysts in women's ovaries,” she said. “This is your metabolism — how your body produces energy. This is your endocrine system, your hormonal system. It's all connected.”
Forster, who gave birth to her first child last year, added that while the name change is a point of pride, more community support is needed. “Women want to meet others going through the same thing, sit down, and just talk,” she said.
Verity PCOS, which runs volunteer-led support groups across the UK — including in Coventry, Warwickshire, Staffordshire, and Worcestershire — has been campaigning for the name change for more than a decade. The group hopes the shift will remove stigma, encourage earlier diagnoses, and ultimately improve quality of life for millions of women.
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