Acceptability of a communication tool to facilitate sexual wellbeing discussions between patients and practitioners in endometriosis care

J. Mills, R A Davenport, T. Lores, L Van Niekerk, H. McHardy, R. Misajon, K A Sherman
Patient education and counseling · 2026 · vol. 154 , pp. 110357 · doi:10.1016/j.pec.2026.110357 · PMID:42914766 · W7223150874
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Abstract

BACKGROUND: People living with endometriosis commonly experience sexual difficulties and associated distress, yet these concerns are frequently overlooked in primary care. Consequently, sexual wellbeing remains under-addressed, despite its substantial impact on overall health-related quality of life (HRQoL). OBJECTIVES: We aimed to develop and assess the acceptability of an online patient-centred sexual wellbeing communication tool for people living with endometriosis experiencing sexual difficulties. METHODS: In collaboration with a patient advisory panel (PAP), a co-designed website was created, providing psychoeducation, communication tools, and practical guidance to support people living with endometriosis in discussing their sexual wellbeing with their general practitioner (GP). RESULTS: The tool was received positively, with participants reporting increased confidence in discussing sexual wellbeing with their GP. Qualitative feedback was largely positive and constructive, identifying minor co-design refinements to the website's layout and navigation that could further enhance acceptability. PRACTICE IMPLICATIONS: For people living with endometriosis, this communication tool can increase their confidence and preparedness to discuss sexual concerns in healthcare settings, which may be associated with improvements in sexual wellbeing and overall HRQoL outcomes. STRENGTHS & LIMITATIONS: This study, and the development of a sexual wellbeing communication tool, addresses a substantial gap in the recognition and management of sexual difficulties and related distress in primary care. The tool was co-designed with a PAP comprising individuals with endometriosis who have lived experience of sexual difficulties. A limitation of the study is the sole reliance on an online resource, which may not be as accessible for all individuals, e.g., those with low digital literacy. CONCLUSION: The sexual wellbeing communication tool is the first to our knowledge to be designed in consultation with people living with endometriosis and, based on quantitative and qualitative data, deemed to be acceptable for use in this group.

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