Project

EUmetriosis: Exploring Structural Barriers to Endometriosis Self-Management Strategies

EUmetriosis is a multi-country project that aims to address unmet needs related to endometriosis and advance patient care. It combines social research, clinical research, and patient and public involvement. As the social science team, we are focusing on developing a deeper understanding of the structural barriers people living with endometriosis face in adopting self-management strategies.

Endometriosis is a chronic inflammatory condition estimated to affect 10% of women of reproductive age and those assigned female at birth, amounting to 200 million people worldwide. Yet, despite its high prevalence and significant patient and socioeconomic burden, endometriosis remains one of the least researched diseases. Decades of indifference and neglect have led to significant delays in diagnosis and inadequate therapeutic approaches to pain and infertility. People living with endometriosis often experience dismissal in health care settings and have to advocate for themselves across medical, policy, and social spheres in order to gain recognition, secure a diagnosis, and access treatment options.

In this context, many people rely on self-management strategies to alleviate pain such as specific diets, heat therapy, exercise or relaxation techniques. While possibly offering relief and hope, these can also be time-consuming, expensive, and burdensome. Exploring these strategies is essential for recognizing the role they play in the lives of those living with endometriosis.

The project aims to gain deeper insights into the role of self-management strategies. We seek to understand how people perceive self-management strategies - do they find that managing their own health is a form of empowerment and autonomy, or continued abandonment and neglect by medical and social systems?

Where self-management plays a significant role, we will explore what enables people to adopt these strategies, what (structural) barriers they face and how these differ across different socio-economic backgrounds and identities. For instance, flexible working arrangements may benefit people working in an office setting but not those working in retail. From a policy perspective, we will examine how policies across Europe address, or fail to address, such structural barriers across different socioeconomic realities.

Ultimately, our goal is to develop recommendations that create an enabling environment where self-management strategies are accessible, helpful, and supported by excellent medical care and comprehensive social policies for diverse groups of people. We will collaborate closely with people living with endometriosis to integrate their experiences into decision-making processes.

credits photo: by Vulvani – www.vulvani.com