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Guest article by Erica Selznick (PhD Student), Wageningen University, 

Paula Blancarte Jaber (PhD Student), University of Edinburgh, 

Andrea Ford (Wellcome Trust Research Fellow), University of Edinburgh, 

and Inga T. Winkler (Associate Professor), Wageningen University 

“Self-management” has become a common phrase to describe people taking an active role in their own health care through changes in their daily lives. For a disease like endometriosis, a chronic inflammatory condition related to menstruation that can cause extreme pain, self-management can be a welcome way of feeling “empowered” to do something about the condition. But it can also highlight how inadequate medical diagnosis and treatment are. Self-management requires support through communities and policies. Without adequate support, empowerment can easily slip into abandonment.  

What is endometriosis?

Endometriosis is a common disease where tissue similar to the lining of the uterus, known as the endometrium, grows outside of the uterus. This often causes chronic pelvic pain, period cramps, painful sex, chronic fatigue, and infertility. The WHO estimates that endometriosis affects 1 in 10 women of reproductive age. Yet, endometriosis continues to be under researched, underfunded, and underdiagnosed.  

Misconceptions around endometriosis abound. It is related to the menstrual cycle (symptoms often flare up during menstruation), but it is a whole-body disease. It often takes 7 to 10 years to get a diagnosis and many people living with endometriosis endure long and challenging healthcare journeys. “It’s all in your head” or “this is normal” are phrases people who live with endometriosis have heard far too often. Treatment options available for endometriosis are commonly ineffective and inadequate, providing only temporary relief; to this day there is no definitive cure.  

What is Self-Management?

Many people living with endometriosis rely on self-management strategies to ease their symptoms. This can include experimenting with diet, exercise, and alternative therapies for pain relief, or changing how, where, and when someone socialises, works, and rests. These strategies require a lot of trial and error to find what works best, if at all. This can be both costly and time-consuming, creating an isolating experience as individuals are left to their own devices while also facing stigmatisation and dismissal in medical spaces, workplaces, and social settings.  

The medical system increasingly acknowledges the role of self-management strategies and seeks to develop a better understanding of what works for whom under which circumstances. This acknowledges that many people living with endometriosis are experts on their own disease. But it is equally important to investigate what policies and social supports are needed to enable people to make such changes in the first place. If people cannot afford different food, dietary recommendations will be inaccessible and create more stress. If people are afraid of losing their jobs due to requests for different working patterns, they will not make those requests (even with menstrual leave policies). If people already feel shame and exhaustion, the fear of being ostracised for different behaviour can contribute to depression.  

What is the EUmetriosis Project?

This is where the EUmetriosis project comes in. It is a multi-country, five-year EU Horizon-funded project that 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. To understand what turns barriers into enablers, we are guided by a human rights framework, which stresses principles of participation, equality, and accountability.

We will gather insights from people living with endometriosis and examine relevant policies across Europe. Throughout, we will pay special attention to diverse identities, needs, and social positions – given the different socio-economic realities people face, strategies that enable self-management cannot be one-size-fits-all. Self-management may provide relief and hope to many people living with endometriosis. But to have a meaningful impact on people’s lives, we need accountable institutions, and a better understanding of the structural barriers people face. Endometriosis is a whole-body disease that requires a whole-society response.