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

Abstract

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.