‘It just stops me from living’: A qualitative study of losses experienced by women with self-reported endometriosis

Abstract

Aims: To understand the experience of loss in Australian women with endometriosis. Design: A total of 532 participants completed an online survey containing three open-ended questions relating to pelvic pain and activity loss due to endometriosis. Participants were Australian women aged between 18 and 50 years (M = 30.8, SD = 7.1) with a self-reported diagnosis of endometriosis. An inductive, qualitative approach, with template analysis was used to identify and organize themes. A pragmatic feminist perspective was used to interpret the findings. Results: Three main themes were identified: the loss of liberty: ‘I'm trapped in the house’; the loss of bodily autonomy: ‘I can barely move/breathe/talk’ and loss of connection: ‘It stops me from being social’. Pain emerged as the greatest concern for participants, preventing them from the physical functioning required to participate in many of life's activities. Conclusions: The losses women with endometriosis experience are wide-reaching, restricting control and choice across multiple life domains. Losses were often unacknowledged by loved ones and healthcare providers, further impacting the physical, emotional and mental health of participants. Patient or Public Contribution: People with endometriosis were involved in the design of the study, including identifying topics of interest.