Long-term sexual outcomes in classic bladder exstrophy: Insights from standardized scores

Reconstruction of the genitalia in patients with classic bladder exstrophy (CBE) is essential to support satisfactory sexual function and fertility. However, due to the complexity of both urinary and genital reconstructive procedures, long-term sexual function may be significantly impaired in adulthood.

To assess long-term sexual outcomes and the prevalence of sexual and erectile dysfunctions in patients with classic bladder exstrophy (CBE). Secondary objectives were to identify predictive factors of sexual dysfunction and describe fertility outcomes.

This retrospective single-center cohort study (part of QUALEXSTRO study) assessed sexuality and fertility in patients aged ≥15 years treated for CBE, using standardized and validated questionnaires: the Female Sexual Function Index (FSFI) for women and the Simplified International Index of Erectile Function (IIEF-5) for men.

Among 63 eligible patients (36 men and 27 women), 22 men and 20 women completed the questionnaire. Median [IQR] age and follow-up were 28 [20-37] and 26 [19-35] years in women, and 23 [17-30] and 21 [16-27] years in men. Thirteen (65 %) women underwent genital surgery (median [IQR] age at first genital surgery: 14 [12-17] years). Among women, 13 (65 %) were sexually active, their median [IQR] age was 34 [27-40] years. Median [IQR] FSFI was 28.4 [14.2-30.1], with 42.6 % meeting criteria for sexual dysfunction (FSFI<26.55). In men, the Ransley-Cantwell technique was mainly used for epispadias repair; 63.6 % required additional urethral surgeries. Twelve men (54.5 %) were sexually active, with a median [IQR] age of 28 [21-37] years. Among them, median [IQR] IIEF-5 score was 23 [16.5-23], and 4 patients (33.3 %) had ED (IIEF-5<22). Satisfaction with genital appearance was low (37.5 % in women, 11.8 % in men). Among sexually active women, 66.7 % became pregnant; 7 delivered 9 children. One man fathered two children naturally.

Patients with CBE report high rates of sexual activity, but variable levels of satisfaction with genital appearance and sexual function. Standard scoring tools may not adequately reflect the specific anatomical and functional characteristics of this population, pointing out the need for adapted assessment instruments to evaluate surgical outcomes more accurately.