Endometriosis and the Service-User Movement

An experience that you’ll come across time and time again with endometriosis patients is that they’ve felt ignored, misunderstood, or outright dismissed by medical professionals. The ‘invisible’ nature of endometriosis and its relation to the reproductive organs and menstrual cycle, something already associated with pain, leads to long diagnosis times and dismissal as ‘normal.'

Then there are extreme and invasive interventions like laparoscopy, hysterectomy, hormonal birth control, and induced menopause to identify and treat the condition, all of which can leave the patient feeling hopeless, powerless, and coerced into something they might not want.

This experience isn’t unique to endometriosis patients and exists across all aspects of health care. In particular, I’m thinking of the mental health ‘service-user movement’.

What is the service-user movement?

The service-user movement describes a diverse range of groups and individuals who advocate for the rights of people who use mental health services. It draws attention to the difficulties they experience.

Mental health services and those who work in them hold great power over service users, and repeated abuse of this power throughout history has provided the context in which the service-user movement developed.

When I read about the service-user movement, I immediately thought of the endometriosis community and, more specifically for this article, how lessons can be learned from the service-user movement in supporting our loved ones with endometriosis.

The service-user movement seeks to highlight oppression and injustice in mental health services and give a voice to service-users who have historically been kept silent. When applied to the endometriosis community, this invites us to listen to the stories of endometriosis patients and their experiences.

On a more personal level, this invites us to actively listen to our partners and understand their experiences by what they tell us, not what we assume to be the case.

Are service-users the experts?

Related to this is the assumption in the service-user movement that service-users are the foremost experts of their own experience. This is an assumption shared by some therapy modalities and can be a valuable tool in supporting a loved one with endometriosis.

They have lived with this condition, know their bodies and experiences better than anyone, and should have the final say in defining that experience. When our loved ones are let down or ignored by medical professionals, we can still validate and accept their lived experiences.

Finally, the service-user movement can be somewhat understood through the phrase ‘nothing about us without us’ and by reflecting on how many decisions and discussions in the past have been made without the input of those who use these services.

Applying this to the endometriosis community, by listening to the experiences of endo patients and accepting them as experts of their bodies, we can advocate for them and support them in advocating for themselves to get the best treatment that is right for them as individuals.

The service-user movement in mental health has been an organized force since the 1980s but has been developing since the early days of psychiatric treatment centuries ago.

Endometriosis treatment is relatively young compared to the advocacy for fair treatment of endometriosis patients.

Still, that advocacy can begin at home and by everyone in an endo patient’s life.