(116) Desire, Function, and Fertility Counseling in Women With Spina Bifida: Lessons From a Transitional Cohort

Abstract Introduction Sexual health in women with spina bifida remains under-explored, often overshadowed by assumptions of sexual inactivity and infertility. As increasing numbers of women with spina bifida reach adulthood and engage in romantic partnerships, it is vital to understand how desire, satisfaction, and contraceptive counseling are addressed in clinical practice. Objective To assess sexual interest, activity, satisfaction, and exposure to reproductive and contraceptive counseling in a cohort of young adult women with spina bifida enrolled in transitional urology care. Methods A retrospective chart and structured interview review was conducted on all female patients with spina bifida aged 18 or older seen in a multidisciplinary transitional urology clinic between 2020–2024. Data extracted included age, interest in sexual activity, sexual activity status, partner status, orgasmic function, satisfaction, and documentation of contraceptive or fertility counseling. Results Of 69 women (median age 25, range: 18–40), 76% reported interest in sexual activity, yet only 38% were currently sexually active. Of those with sexual experience, only 19% reported satisfaction and 12% reported consistent ability to achieve orgasm. 91% had no documented contraceptive counseling despite 34% reporting romantic partnerships. Only 4 patients had documentation of any fertility counseling. Themes of fear of incontinence during sex, low body confidence, and pain were noted in qualitative responses but rarely addressed in clinic documentation. Conclusions Women with spina bifida show high sexual interest but report low satisfaction and limited counseling on contraception or fertility. The mismatch between interest and function underscores the need for routine sexual health conversations that normalize sexual agency and address neurologic-specific barriers. ISSWSH providers must champion inclusive sexual medicine that meets the evolving needs of women with disabilities. Disclosure No.