Overview
Endometriosis affects around one in ten women, yet many struggle to gain understanding and support at work, in education, and in healthcare. This project worked directly with people living with endometriosis to ensure their experiences informed policy‑focused recommendations aimed at improving awareness and support across Scotland.
The challenge
Many people with endometriosis manage significant pain and fatigue while also carrying the burden of explaining their condition to employers, educators, and healthcare professionals. Despite growing awareness, gaps in understanding and systemic support continue to affect daily life and long‑term wellbeing.
What we did
Building on existing research into how people cope with endometriosis, this project partnered with patient organisations Endo Warriors West Lothian and The Lowdown. Through a series of co‑production workshops, people with lived experience helped shape the project’s direction and priorities.
While initial plans focused on developing self‑management resources, workshop discussions highlighted a clear message: individual coping strategies alone are not enough. Participants emphasised the need for change at a systems level, to reduce the responsibility placed on individuals to educate others and advocate for themselves.
Impact
As a result, the project shifted its focus towards influencing policy and practice. Drawing directly on lived experience and research evidence, the team produced a policy brief and plans to present recommendations to the Scottish Government Women’s Health Policy Team.
Key impacts include:
- Translating lived experience into concrete, policy‑facing recommendations.
- Raising awareness of endometriosis as a workplace, education, and healthcare issue.
- Strengthening relationships between researchers, patient organisations, and policymakers.
The recommendations call for improved education and awareness, stronger workplace policies, and the meaningful involvement of people with lived experience in the design of services and policy.