Women across the UK living with polycystic ovary syndrome (PCOS) are facing systemic shortcomings in diagnosis and care, according to a new report from the PCOS All-Party Parliamentary Group (APPG).
The report reveals deeply concerning patterns: prolonged delays in diagnosis, fragmented care, and minimal post-diagnosis support. As a result, many women are turning to social media for guidance.
PCOS is a complex, lifelong hormonal condition that affects an estimated one in eight women of childbearing age in the UK. It negatively impacts reproductive, metabolic, and mental health.
The APPG report, based on oral evidence sessions, surveys of over 2,000 patients, and Freedom of Information requests across 42 Integrated Care Boards, exposes the depth of the problem.
More than one-third of women waited longer than four years for a PCOS diagnosis, and 38% received no post–diagnosis support. Only 3% felt adequately supported by healthcare professionals, while nearly 30% reported feeling dismissed or not taken seriously.
Turning to Social Media—At a Cost
Nearly half (47%) of women said they relied on social media or influencers to understand PCOS, compared to just 23% who learned from their GP.
This reliance on unverified information is comforting yet risky.
“There’s a lot of really worrying misinformation,” warns Rachel Morman, volunteer trustee at Verity. “False claims of cures and misleading advice can do real harm, so we strongly encourage seeking evidence-based information.”
Voices from Experience
Georgia Pemberton-Billing, diagnosed in April, described her diagnosis journey as arduous. Despite having a child previously, GPs initially dismissed her symptoms. Post-diagnosis, the only recommendation she received was to take the contraceptive pill—contradicting her desire to conceive. Feeling unsupported, she turned to TikTok to craft her own diet and exercise plan, calling it a “lifeline” despite the “overwhelming” misinformation.
Similarly, Tiffany Markwick, diagnosed after an unrelated ultrasound earlier this year, received no follow-up advice or signposting to support networks. “They said they wouldn’t do anything for me unless I tried to get pregnant,” she said, adding that she felt “frustrated and alone.” She found relief in Facebook support groups but cautions that online information can also be contradictory.
The Case for Reform
Dr Sophie Clarke, a consultant endocrinologist at UCL Hospitals, emphasises that PCOS is more than a reproductive disorder—it carries long-term risks like type 2 diabetes, endometrial cancer, and cardiovascular disease. She welcomes the report’s call for increased clinician education and research so patients and doctors can access quality evidence-based care.
The APPG recommends recognising PCOS as a chronic, multi-system condition; embedding PCOS-specific training into GP and nursing education; mandating women’s health rotations for GP trainees; funding culturally sensitive care; licensing essential treatments like metformin and GLP-1s; and restoring NHS access to laser hair removal.
Wider Recognition and Steps Ahead
The absence of national UK guidelines has created a postcode lottery—care varies significantly by region. NICE is expected to publish its first comprehensive PCOS guidelines on 3 November 2026, aiming to standardise diagnostic and treatment approaches.
Efforts are also underway to rename the condition. Critics argue the current name—Polycystic Ovary Syndrome—is misleading, focusing on ovarian cysts that are neither true cysts nor present in all cases.
A global initiative led by Professor Helena Teede at Monash University, with support from Verity and others, is exploring terminology reflecting endocrine and metabolic features.
Surveys show 86% of patients and 76% of health professionals support a name change. A consensus is expected by end of 2025, followed by a WHO-endorsed transition period.
Government Response
A spokesperson from the Department of Health and Social Care acknowledged the failures: “Women suffering with gynaecological conditions, including PCOS, have been failed for far too long.” They cited progress through the Women’s Health Strategy—delivering nearly 5 million extra appointments, tackling waitlists, enhancing training, and updating guidance to improve PCOS care.
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