To conduct a systematic review of self-reported experiences of sexual function and dysfunction in individuals with spina bifida (SB).

Medline, Embase, and Web of Science were systematically searched. Studies included contained self-reported data from SB patients on one or more of the following sexual function domains: Genital sensitivity, orgasm, erectile function, ejaculation, lubrication, and/or dyspareunia. Two authors independently assessed eligibility, extracted data, and cross-checked results, with disagreements resolved by consensus. Studies included contained self-reported data from SB patients on one or more of the following sexual function domains: Genital sensitivity, orgasm, erectile function, ejaculation, lubrication, and/or dyspareunia.

Systematic search yielded 23 studies representing 1441 patients (816 males, 625 females). Eight utilized questionnaires validated in non–SB adults; the remainder used semi-structured interviews and non–validated instruments. Eleven assessed dysfunctions in both sexes, 10 in males, and 2 in females. Erectile function and orgasm were the most commonly assessed outcomes in males and females respectively. 12%-88% of males experienced erectile dysfunction; a majority (51%-90%) reported normal ejaculatory function. Many females were unable to experience orgasm (28%-63%).

Males with SB report significant erectile and ejaculatory dysfunction. Both sexes report impaired orgasms and genital sensitivity. SB-specific instruments assessing sexual dysfunction are needed in order to improve multidisciplinary care for this population.