Endometriosis registry could stop 'guesswork', patients say
Hayley Barlow-Ford says better data would have helped her make an "informed choice" about surgery.
www.bbc.comHere’s a brief update on Endometriosis UK and related UK developments.
- Endometriosis UK has been active with campaign and policy outputs in 2026, including action month communications and calls to MPs to improve diagnosis times and care. This aligns with ongoing government and NHS attention to endometriosis care in the UK.[3][5]
- There is growing pressure for a national endometriosis registry to track diagnosis, treatments, and outcomes, a step that UK campaigners say would reduce waiting times and improve care, and which the government has shown interest in within the context of women’s health strategy.[2][3]
- Notable local initiatives and service developments include the opening of dedicated endometriosis support centres in some areas (for example, Hull) to assist with diagnosis navigation and patient support, illustrating a push toward accessible, patient-centered services.[6]
- Coverage from major UK outlets in 2025–2026 highlights long diagnostic delays (often many years) and calls for systemic improvements in care pathways, data collection, and workplace support for those living with endometriosis.[1][9][3]
Illustrative example:
- Endometriosis Action Month 2026 drew attention to the theme “Endometriosis Doesn’t Wait” and published findings such as the average time to diagnosis (around 9 years 4 months, longer for some communities), underscoring the urgency for action.[5]
If you’d like, I can pull a brief, up-to-date list of Endometriosis UK resources, relevant NHS pathways, and a one-page briefing tailored to your needs (e.g., for an MP, clinician, or workplace advocacy). I can also summarize key actions you can take locally to influence policy or access care in Los Angeles or California, if that helps.
Citations:
- Endometriosis UK news and actions in 2026[3]
- National registry discussions and patient advocacy[2]
- Endometriosis Action Month 2026 and diagnosis time data[5]
- Local support centers and care navigation efforts[6]