We call for a National Endometriosis Registry to record, track and annually audit data on diagnosis, treatment & outcomes. We think this could help to:
Hold services to account; Reduce postcode inequality; Ensure endometriosis is treated as a chronic condition with more timely, effective care
Leading charities estimate it takes almost 9 years on average in the UK to be diagnosed with endometriosis, which can cause avoidable pain and mental health struggles, and is linked to fertility problems. We believe that systems to track diagnosis, treatment, or outcomes are inadequate, and that there are limited ways to see where care may be failing or to measure improvement. We think other countries have proven that registries and audits can improve care, shorten delays, and drive research.
The government's response
There are no current plans to develop an endometriosis registry, but the Government acknowledges the challenges and has made progress towards improving endometriosis diagnosis, treatment and care.
It is unacceptable that women can wait so long for an endometriosis diagnosis, and the Government is taking urgent action to address this.
Improving Diagnosis and Care
Through our 10 Year Health Plan (10YHP), we are committed to prioritising women’s health as we build an NHS fit for the future. Women's Health Hubs (WHH) were established through a pilot to improve care for gynaecological conditions, with care for endometriosis outlined as a core service. WHH aim to address gaps in provision and long waiting times, specifically for those from low socio-economic or ethnic minority backgrounds. The 10YHP neighbourhood delivery of care model will bring together teams of health care professionals, reducing the need for secondary care referrals and ensuring a holistic approach. The Government is supporting integrated care boards to use the learning from WHH pilots to improve local delivery of services to women.
Another key part of the Government’s mission is reducing waiting lists. We are committed to cutting waiting times across all specialities, including gynaecology, and have delivered 5.2 million additional appointments between July 2024 and June 2025. We have confirmed over £6 billion additional capital investment to expand capacity across diagnostics, electives and urgent care. This includes expanding the number of surgical hubs, which provide valuable and protected capacity across elective specialties. Surgical hubs are designed to deliver high-volume, low-complexity elective surgeries, including gynaecological procedures. As of January 2026, over half of the 124 operational elective surgical hubs in England provide gynaecology services.
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At the end of November 2025, the number of pathways on the gynaecology waiting list was 575,986, a reduction of nearly 20,000 (-3.4%) since the start of July 2024.
In September 2025, we announced an “online hospital” – NHS Online – which will give people the choice of getting the specialist care they need from their home. NHS Online will help to reduce patient waiting times, delivering the equivalent of up to 8.5 million appointments and assessments in its first three years, four times more than an average trust, while enhancing patient choice and control over their care. Menstrual problems which may be a sign of endometriosis will be among the first conditions available for referral to NHS Online from 2027.
In November 2024 the National Institute for Health and Care Excellence (NICE) updated its guideline on endometriosis. This makes firmer recommendations for healthcare professionals on referral and investigations for women with suspected diagnosis, and will help the estimated 1 in 10 women with endometriosis receive a diagnosis faster.
NHS England is updating the service specification for severe endometriosis. This will improve the standards of care for women with severe endometriosis by ensuring specialist services have access to the most up-to-date evidence and advice.
Improving Research
The Department, through the National Institute for Health and Care Research (NIHR), has commissioned a number of studies focused on endometriosis diagnosis, treatment and patient experience. NIHR is currently funding 5 active research awards totalling an investment of approximately £5.5 million. A further £2.3 million on the effectiveness of pain management for endometriosis is due to commence in March 2026.
Research has led to new treatments being made available, including the recent NICE approval of two pills to treat endometriosis – Relugolix and Linzagolix. NICE will be working with NHS systems to ensure adoption of this best practice endometriosis care including access to approved medicines. Research into non-hormonal drugs that may modify the severity and progression of endometriosis is currently under way in the UK.
Improving awareness
Last year the Department for Education published revised relationships and sex education (RSE) and health education statutory guidance. This emphasises a comprehensive understanding of women’s health topics. The guidance stipulates that secondary school RSE and health education lessons should cover menstrual and gynaecological health, including aspects such as endometriosis and when to seek help from healthcare professionals.
The General Medical Council has introduced the Medical Licensing Assessment to encourage a better understanding of common women’s health problems, including endometriosis, among all doctors. Women's health is also included the Royal College of General Practitioners’ curriculum for trainee GPs. This will encourage a better understanding of common women’s health problems among all doctors and trainee GPs as they start their careers in the UK.
The Government acknowledges the challenges faced by women with endometriosis and the impact it has on their lives. Although we have no plans for an endometriosis registry, we know that women deserve better, which is why we are placing women’s equality at the heart of our mission.