The Care Seeking Journeys of People with Endometriosis

Endometriosis care-seeking was a complex and difficult process for all of the women in this study. For many participants the process began with pain, however, they did not seek out care at this point, because they believed that what they were experiencing was normal, interpreting it within a cultural context that normalizes period pain. This thesis is a qualitative interview study examining the journeys of ten women with endometriosis in seeking out appropriate care for their condition. It also includes survey data collected from 108 respondents. The research explores the complicated care-seeking journeys of folks with endometriosis and looks at the barriers they experience in their quest to find appropriate care. Most of these barriers center around issues relating to the healthcare system and social attitudes surrounding chronic pain. Many participants experienced financial hardships in paying for care, and some had difficulty finding an experienced provider within their insurance network. The thesis also explores in particular the role that social attitudes towards women’s pain play in the care they seek out, receive, and fail to receive. Many subjects struggled to have doctors believe their pain and had difficulty finding a physician whom they could trust. All of these stories show the difficulties in navigating the healthcare system with endometriosis and portray how social and systemic barriers combine to hinder access to appropriate care.