“It’s changed forever”: the lived experience of sexuality and sexual functioning in women with cauda equina syndrome (CES)

Purpose: To explore women’s lived experiences of intimacy, sexuality and sexual functioning in the context of cauda equina syndrome (CES). Methods: Ten women completed an in-depth semi-structured interview exploring the psychosocial impact of CES on their sexuality and data were analyzed using Interpretative Phenomenological Analysis (IPA). Results: One superordinate theme was generated: “Sexuality forever altered, it’s changed completely,” reflecting the enduring impact of CES on women’s sexuality. Five subordinate themes emerged reflecting a range of changed roles and relationships, primarily associated with loss of sexual identity and a sense that health professionals did not prioritize sexual functioning (1): Loss of worth as a sexual being: “Feel like a nothing” (2) Relationships have changed: “It’s not a meeting of equals anymore” (3) Lack of professional support: “We don’t like to talk about anything below the waist” (4) Challenges for motherhood: “What kind of future will they have with a mother like me…” and (5) Finding ways of coping: “Closed the door on it.” Conclusion: Findings highlight the detrimental effect of CES, directly and indirectly, on women’s sexuality. There is a need for a multidisciplinary approach to address the physical, emotional, cognitive, and behavioural effects experienced in relation to sexuality as part of a rehabilitative process.