What the Social Sciences Work Package Aims to Achieve

Self-management is increasingly promoted in endometriosis care, yet there is limited understanding of how people living with the disease actually experience it. For some, self-management may feel empowering, offering autonomy and control, yet for others, self-management can feel like abandonment, or that they are having to deal with the disease and their symptoms on their own.

The Social Sciences Work Package of EUmetriosis aims to address this gap. This research explores how people across Europe understand and experience self-management strategies in the context of their personal lives, healthcare encounters, and broader social structures. Many with endometriosis have long and complicated relationships with healthcare systems marked by delayed diagnosis, dismissal, or stigma. These experiences profoundly shape how care recommendations are received and acted upon.

Why Social Science Matters in Endometriosis Research

The social sciences team will collaborate with medical scientists to highlight the importance of the social nature of health care. Interdisciplinary research is essential for meaningful change yet remains challenging in practice.

This work aims to:

  • Inform clinical guidelines with real-world context
  • Identify structural barriers and facilitators to effective care
  • Support policy recommendations that improve quality of life
  • Reframe self-management as a shared societal responsibility, not just an individual burden

All teams involved in the EUmetriosis project share a commitment to improving how endometriosis is understood, diagnosed, treated, and supported. By integrating social science, we hope to improve outcomes:

  • For patients: by providing clearer, evidence-based understandings of self-management and better support across healthcare and everyday life
  • For clinicians: improved tools and insights to meaningfully engage with patients
  • For policymakers: providing meaningful, qualitative evidence to guide decisions that have real-life impact for those living with endometriosis

To read more from the social science team, visit our previous Team Spotlight article here.