Let's Talk about Sex: The Development of Communication Tools for People Living with Endometriosis

Between 70-80% of people living with endometriosis (PlwE) report sexual dysfunction (SD)1. Preliminary data by Mills and Misajon demonstrate higher levels of SD and sexual distress in PlwE relative to controls, confirming previous reports2,3. SD contributes a significant burden of disease in endometriosis4, and is associated with various negative prognostic factors including poor quality of life5. Nonetheless, SD remains overlooked in PlwE, with many individuals reluctant to disclose with GPs for fear of being stigmatised6, and GPs acknowledging insufficient awareness of common endometriosis symptoms6,7.The barriers to person-provider communication for PlwE regarding their sexual relationships remain unclear, with a distinct lack of person-centered resources to facilitate effective communication.

This mixed-methods project aims to identify the barriers PlwE encounter when discussing their sexual relationships with medical practitioners with the view to co-designing communication tools (i.e., a question builder for PlwE and a conversation aid for practitioners). Acknowledging the international impetus for lived experience perspectives in holistic care, researchers will consult with PlwE to ensure resources are created for people with endometriosis by people with endometriosis. In doing so, PlwE will be empowered as active participants and experts in their sexual relationships through resources which will promote timely SD assessment and intervention.