Exploring the Lived Experience of Women’s Help-Seeking for Endometriosis-related Dyspareunia in Australia.

Endometriosis is a chronic and debilitating condition that significantly impacts the lives of many women, yet it remains significantly under-researched, particularly in relation to the sexual difficulties it causes. The condition is characterised by the presence of endometrial-like tissue outside the uterus, leading to a range of symptoms, including chronic pelvic pain and dyspareunia (painful intercourse). This study aims to address this gap by investigating the lived experiences of Australian women who have sought help for dyspareunia associated with endometriosis. The primary objectives of this research are threefold: first, to explore the help-seeking experiences of women suffering from endometriosis-related dyspareunia; second, to identify the various factors that influence and shape these experiences; and third, to draw upon the insights gained from women's narratives to propose enhancements in service delivery within healthcare settings. This study employs a qualitative phenomenological approach, specifically Interpretive Phenomenological Analysis (IPA), to explore the complex challenges encountered by women seeking help. Through a feminist lens, this research allows for a nuanced exploration of the power dynamics that shape women’s lives, particularly in contexts where voices have historically been marginalised. Using semi structured interviews, six women were interviewed to explore their personal narratives regarding help seeking experiences for endometriosis-related dyspareunia. Thematic IPA analysis was used to facilitate a nuanced understanding of the phenomenon, allowing for the identification of key themes that reflect the complexities of their experiences. The analysis revealed five key themes and 13 subthemes that captured the experiences of women living with endometriosis-related dyspareunia. The major themes identified were: ‘Health System Complexities’; ‘Normalisation of Pain’; ‘Emotional Impacts’; ‘Self Coping Strategies’; and finally, “Effective Forms of Support”. These findings enhance our understanding of the intricate challenges faced by women experiencing endometriosis-related dyspareunia in Australia. By highlighting the complexities of their lived experiences, this study serves as an important step toward improving awareness, enhancing support, and improving healthcare services for women impacted by this symptom.