Women with a lifelong hormonal condition are being failed – a new name would help promote understanding
3 min read
Polycystic Ovary Syndrome (PCOS) affects one in eight women, yet it remains consistently overlooked. The cost of that neglect is paid first, and most heavily, by girls, shaping health outcomes for life.
I know this not just as a Member of Parliament, but as someone who lives with PCOS. It is why I chose to chair the All-Party Parliamentary Group on PCOS, and why I am determined to see it taken seriously. PCOS is a lifelong hormonal condition affecting menstrual cycles, fertility, weight, mental health and long-term risks such as diabetes and heart disease
I have spent the past year listening to patients, clinicians and researchers. What we heard was strikingly consistent: not just frustration with a diagnosis but deep anger and distress at how often people are dismissed, delayed or left alone to navigate a system that lacks understanding and clear pathways.
PCOS often begins in adolescence. Irregular periods, acne, weight changes and excess hair growth appear at a moment when confidence is fragile and self-identity is still forming. Yet girls are frequently told their symptoms are “normal” or that they simply need to lose weight.
Many are advised to return only when they want to have children.
By then, symptoms are often more complex and trust in the system has eroded, despite clear links between PCOS and long-term physical and mental health risks.
Our parliamentary inquiry, the first of its kind, brought together lived experience and system-level evidence. It exposed widespread delays in diagnosis, fragmented care split across different specialties, stark inequalities linked to ethnicity and income, and a near-total absence of psychological support. We also heard how limited training, research gaps and poor information leave both patients and clinicians without the tools they need.
At its heart, this is structural. PCOS is too often treated as a niche reproductive issue rather than a complex, lifelong condition that affects the whole body. This framing delays diagnosis and prevents joined-up care.
There has been a welcome growth in media and policy attention, built on decades of work by patient advocacy groups such as Verity – but visibility alone does not deliver care.
This matters now because we are at a genuine moment of opportunity. New NICE guidelines are on the horizon and internationally there is momentum behind a long-overdue name change for PCOS. The current name is misleading and fuels misunderstanding by focusing narrowly on ovaries, rather than reflecting the condition’s wider, whole-body impacts.
This is not semantics. Names shape understanding. Understanding shapes diagnosis. Diagnosis shapes care. A clearer, more accurate name has the potential to unlock better coding, better data, and better clinical pathways, and to move PCOS out of the margins of women’s health policy, where it has sat for decades.
Handled well, this moment could mark a turning point. International Women’s Day invites us to reflect on progress, but also on what remains unfinished. For PCOS, the unfinished business is clear. We need earlier diagnosis, joined-up care and a system that listens to girls when they first say something is wrong.
We now have the evidence, the political attention and the policy levers to change that. The APPG’s report sets out a clear, practical roadmap for reform. I urge the government, NHS leaders, professional bodies and commissioners to act on its recommendations. PCOS must no longer be an afterthought in health policy.
