The pain of It all: a political anlaysis of the lived experiences of endometriosis

Despite the prevalence of endometriosis amongst women and gender/sex-diverse persons, patients still experience significant barriers to adequate care, including diagnostic delays, the trivialization of their pain, and the dismissal of their experiences in healthcare contexts. In this thesis, I argue that endometriosis is politically important because particularly when they lack access to adequate care, patients' chronic illness and / or pain, inhibits their ability to participate in world-making and to create meaningful social roles for themselves. Endometriosis prevents the patient from world-making by inhibiting their work, education, relationships, connection with others, opportunities, and pleasure. In spite of this, patients develop methods of resistance and coping through their learned resiliency. Through qualitative thematic analysis of six endometriosis life writing books and semi-structured interviews with eleven participants with endometriosis, three overarching themes emerged: embodied knowledge, institutional violence, and resilience. These life writing stories and the interviews with participants reveal the political importance of the embodied, lived experiences of patients in understanding and creating better endometriosis care.