Sexual function in adolescents and young adults (AYA) with Bladder Exstrophy-Epispadias Complex: influence of the incontinence

Bladder exstrophy-epispadias complex (BEEC) is the most severe congenital anomaly involving the urinary tract. Currently, there is a growing interest in the long-term outcomes and their impact on quality of life (QoL). Our aim was to determine the incidence of urinary incontinence and whether it affects sexual function. The study population included BEEC patients >18 years treated at a specialized third-level hospital. We contacted them via telephone and emailed a voluntary online questionnaire which was anonymously self-completed. The online test included validated questionnaires to assess the following parameters: incontinence (ICIQ-SF), LUTS (ICIQ-FLUTS/IPSS) and sexual function (FSH/FSM2). Answers of the questionnaires were collected into a database for further evaluation. Statistical significance was defined by p< 0.05. Among the thirteen patients (7 men and 6 women) who answered the questionnaire the median score on ICIQ-SF was 6/21. Based on that questionnaire only 4 patients (30.8%) were classified as continent (ICIQ-SF=0). However, when directly asked if they were able to stay dry in their day-to-day life, 61.5% responded affirmatively, a number that doubled those who were considered continent according to the ICIQ-SF test. Incontinence was associated with an increased sexual dysfunction, having a correlation with low satisfaction in men and diminished libido and lubrication in women. In the present study, we found a high incontinence rate, which is discrepant with the self-perception of day-to-day dryness. In addition, our data showed that incontinence is linked to a diminished sexual function.