After decades of being called polycystic ovary syndrome (PCOS), the condition has been renamed polyendocrine metabolic ovarian syndrome (PMOS) in an effort to improve treatment and reduce stigma. The new name, published in the Lancet, aims to shift focus from the ovaries to the whole-body effects of the disorder, which include cardio-metabolic, mental, skin, and reproductive health issues.
Weight Stigma and Dismissive Care
Amy, diagnosed at age 14, recalls being told she had PCOS based on physical traits like extra facial hair and irregular periods. She was prescribed Dianette but stopped due to side effects. Years later, when her symptoms worsened, a GP dismissed her concerns, focusing solely on her weight. 'I can't express how deflated and pointless I felt, how humiliated and shameful I felt,' she says. After a referral to an endocrinologist, nurses reacted with horror at her hairy stomach, and the doctor was dismissive. Amy avoided doctors for a decade, only to be diagnosed with stage 4B endometrial cancer at 37, a known risk of untreated PCOS.
Late Diagnosis and Loneliness
Louisa struggled with infrequent periods and pain but was told it didn't matter unless she wanted children. In her 30s, a sympathetic GP connected her symptoms and prescribed contraceptives. 'I welcome the name change if it helps women get a diagnosis and treatment sooner,' she says. She now has scars from preventable acne and requires electrolysis for coarse facial hair, which she says makes her feel like a freak.
Symptom Ignorance and Loss of Trust
One anonymous reader had symptoms brushed off as unrelated. A doctor told her to eat more vegetables after blood tests. 'I lost so much trust in my body,' she says. A later cervical check led to a proper diagnosis when a doctor asked about her period regularity.
Inadequate Care and Private Scans
Alex had to research her own symptoms and present them to a doctor. After a referral for an ovarian scan was never made, she paid for a private scan. Post-diagnosis, she was told to manage symptoms through weight loss and return if she struggled to conceive.
Dismissive Treatment and International Care
Another anonymous reader was diagnosed with both PCOS and endometriosis at 26 after years of dismissive GPs. A nurse advised her to go to A&E during severe pain. After laparoscopy, doctors suggested she 'get pregnant and stop complaining.' It took 10 years and doctors in Germany to receive proper treatment for pre-diabetes and low iron. 'I still want to scream,' she says, reflecting on lost years.
These stories are among over 300 shared by Guardian readers, highlighting the urgent need for better awareness and care for PMOS.
