‘A day to day struggle’: A comparative qualitative study on experiences of women with endometriosis and chronic pelvic pain

Abstract

Abstract There is an increasing body of research that considers the lived experiences of women with endometriosis. However, less attention has been paid to women’s lived experiences with non-endometriosis related chronic pelvic pain (CPP). The aim of this study was to explore similarities and differences in experiences of women with endometriosis and non-endometriosis related CPP. A total of 17 participants aged between 21 and 48 years old participated in three focus groups between June 2017 and February 2018. Using thematic analysis three main themes were found. In “the struggling women” women with both endometriosis and non-endometriosis related CPP described the impact that pain had across significant aspects of their lives including; intimate relationships, fertility, parenting and work. In the “unheard women”, participants shared similar accounts of not being listened to or taken seriously by healthcare professionals leading to incorrect or delayed diagnosis, and unnecessary treatments. In the final theme, “the self-silenced women” all participants described how a societal normalisation of heavy menstrual bleeding, pelvic pain and dyspareunia led to women to silence their experiences. While all women wanted to resist such silencing through information and support seeking, women with non-endometriosis related CPP described fewer avenues to accessing credible resources or networks for support. Greater awareness, education and support resources are needed for women who experience non-endometriosis related CPP.