Male Sexuality, Fertility, and Urinary Continence in Bladder Exstrophy-Epispadias Complex

Abstract

Background The bladder exstrophy-epispadias complex is a rare congenital malformation associated with severe dysfunction of the genital and urinary tracts and requiring a staged surgical reconstruction. Aim The primary aims of this study were to report the sexuality, infertility, and urinary incontinence outcomes in a cohort of men born with bladder exstrophy-epispadias complex. The secondary aim was to highlight some predictive factors of infertility in this population. Methods We conducted a descriptive, cross-sectional study of men diagnosed with classic presentations of bladder exstrophy or epispadias. Outcomes Patients were asked to complete 4 validated questionnaires: the International Index of Erectile Function (IIEF)-5, the Erection Hardness Score (EHS), the Self-Esteem and Relationship, and the International Consultation Incontinence modular Questionnaire-Short Form. Fertility potential was assessed with semen analysis and a non-validated questionnaire. Results 38 Patients 18–64 years old (M [mean] = 32.2) completed the questionnaires. The average IIEF-5 score was 18.1/25 (ranging from 3–25; SE = 7.62), with results indicating that 55% of the sample had normal erectile function. Results also showed higher scores for patients with normal spermatozoa concentration (M = 22.75, SE = 1.89, P = .08) than for those with oligospermia (M = 17.30, SE = 8.53, P = .08). Results on the IIEF-5 also indicated higher scores for patients who conceived children without assisted reproductive technologies (ART) (M = 22.83, SE = 2.317, P = .02) than for patients without children (M = 15.76, SE = 8.342, P = .02). The average EHS was 3.43/4 (ranging from 1–4, SE = 0.9). EHS was higher for patients who had reconstruction than for patients who had cystectomy (M = 3.88, SE = 1.07 and 2.78, SE = 1.09, P = .02). The average total Self-Esteem and Relationship score was 67.04/100 (ranging from 10.71–96.43, SE = 22.11). The average total International Consultation Incontinence modular Questionnaire-Short Form score was 4.97/21 (ranging from 0–18, SE = 5.44), higher score indicating more urinary incontinence. Among the patients surveyed, 31.6% were parents at the time of study and 50% of them benefited from ART. With regards to the 14 semen analyses performed, only 7.1% produced normal results and 44.7% indicated that ejaculation was weak and dribbling. Clinical Translation Erectile function appears to be decreased and psychological aspects of sexuality indicate low self-esteem about sexual relationship. Although ethical problems could not allow prospective spermograms, our cohort is large enough to provide significant data. Conclusions Early sperm storage for future ART, sexual medicine management, and complementary genital reconstruction in adulthood constitute potential treatment options for this population.

Health-Related Quality of Life in Patients with the Bladder Exstrophy-Epispadias Complex and Relationship to Incontinence and Sexual Factors: A Review of the Recent Literature

“…Sixteen articles fulfilled inclusion criteria 14,15,20,[28][29][30][31][32][33][34][35][36][37][38][39][40] of which eight publications used a validated generic HRQOL instrument. 28,[30][31][32]36,[38][39][40] Five studies used instruments measuring symptom-specific HRQOL, or more precisely the impact of incontinence on HRQOL.…”

“…28,[30][31][32]36,[38][39][40] Five studies used instruments measuring symptom-specific HRQOL, or more precisely the impact of incontinence on HRQOL. 28,30,35,37,40 Eleven publications used self-designed questionnaires only or in combination with validated instruments to assess different aspects of HRQOL as psychosocial or psychosexual health. 14,15,20,[28][29][30][31]34,[38][39][40] For a summary of the different generic and incontinence-specific instruments with demonstrated validity and reliability, used in the studies, see ►Table 1.…”

“…32 Most studies conclude that the majority of patients have long-lasting relationships and the rate of having a partner or being married varies from 0 to 73%. 14,15,20,29,34,37,39,40 Patients with the BEEC are also reported to be highly educated and to be employed. 14,15,29,30,32,37,40…”

“…40 Finally, of 38 men with the BEEC, with an incontinence rate of 63%, satisfaction was still relatively high, with 46% reporting no interference by continence status on their daily life using ICIQ-SF. 37…”

“…Two reports conclude that HRQOL and sexual function are more or less similar to those among the general population, 29,40 in contrast to a study evaluating male sexuality which concludes that reduced erectile function and psychological aspects of sexuality resulted in low self-esteem in terms of sexual relationships. 37 A common concern is dissatisfactionwith genital appearance and the size of the penis, which is highlighted in several studies, 20,29,37 and, in reports using validated instruments, it has been shown to have a considerable impact on HRQOL. 31,38,39…”