BACKGROUND: Bladder Exstrophy-Epispadias Complex (BEEC) is a rare congenital malformation that varies from pure epispadias to classic exstrophy. This condition is linked with lesser-known complications that impact patients later in life, including erectile dysfunction and ejaculatory disorders. Our goal was to assess the sexual function and quality of life in young adult males with this condition.
METHODS: Male patients from the BEEC database, including 173 patients across Iran recruited between 2012 and 2023, who were over the age of 18 were sent the Erection Hardness Score (EHS), International Index of Erectile Function (IIEF)-15 questionnaire, and Short Form Health Surveyversion 2.0 (SF-12v2). Those who answered the survey were included and retrospective review of their medical records was carried out for a complete medical history.Quality of life was evaluated using the SF-12v2, with physical (PCS-12) and mental (MCS-12) component scores derived from a normative US population scale, which ranges from 0 (worst) to 100 (best), and uses an average of 50 and a standard deviation of 10 for comparison. PCS-12scores at or below 50 and MCS-12 scores at or below 42 are indicative of physical conditions and clinical depression, respectively.
RESULTS: 22 young adult males responded to the questionnaires and were included with an average age of 27.6 years, with a median follow up time of 5.0 years (IQR: 19; range: <1 - 29) since their lastsurgery. The average EHS was 3.2 ± 1.1, indicating fairly good erection rigidity. However, the overall IIEF-15 score was 28.4 ± 15.6, showing moderate erectile dysfunction. Intercourse satisfaction had the highest dysfunction, while sexual desire was the least dysfunctional (Table 1, Figure 1). The average PCS-12 and MCS-12 scores were 42.1 ± 8.0 and 40.6 ± 14.2, respectively, which are acceptable compared to the general population in Iran (Table 2).
CONCLUSIONS: Long-term challenges affecting quality of life are a significant concern for patients with BEEC. Our study found satisfactory erection rigidity but moderate erectile dysfunction, particularly in intercourse satisfaction. Continuous follow-up is essential to support patients in achieving satisfactory sexual function and to recommend further treatment for the functional and aesthetic aspects of their genitourinary tracts if necessary. Concerning quality of life, although our respondents indicated physical conditions and clinical depression, their scores were not significantly lower than those of the general Iranian population.
