Long-term sexual outcomes in patients with exstrophy-epispadias complex

Exstrophy-epispadias complex (EEC) is a spectrum of genitourinary malformations that ranges in severity and affects external genitalia and the lower urinary tract. The aim of this study was to determine the long-term sexual outcomes of patients with EEC. Sexual outcomes were hypothesized to be related to those of urinary ones. A retrospective database including all patients with EEC who had surgery at a tertiary referral institution from 1990 to 2019 was created. Data based on patient's charts were collected: demographics, surgeries, sexual outcomes, urinary outcomes. Fifty-eight patients with EEC had surgery at tertiary referral institution and entered our database. For this analysis of sexual outcomes, a sub-set of the whole population was selected: patients being 14 years old and older, having at least one surgery at our institution and having at least 12 months of follow-up. Applying this selection criteria to our database resulted in a series of 29 patients. High rates of sexual activity were observed in pubertal and post-pubertal men (96%) and women (75%). Seventy-nine percent of men and 67% of women reported sexual satisfaction; 63% of men reported normal ejaculation. To achieve these rates, 96% of men required surgery (84% penoplasty, 52% phalloplasty), and 25% of women required introitoplasty. Fertility was achieved in 67% of men and 100% of women. Assisted reproductive technology was needed in one man. Continence rates were high (diurnal continence in 83% and nocturnal continence in 93%). However, 76% required multiple continence procedures. Men and women with EEC can have good long-term sexual and urinary outcomes, but this may require multiple surgeries. Good sexual outcomes seem to be related to good urinary and continence outcome.