Bladder exstrophy is a complex congenital anomaly with long-term impact on the health of patients. Our objective was to determine the psychosexual health outcomes of adult women with bladder exstrophy.METHODS:
We performed a qualitative study using an online survey posted through social media.RESULTS:
Of 147 respondents, 98 were female >18 years old with bladder exstrophy (range 19–66 years, mean 35.5). The majority were non-Hispanic white (87.8%), at least some college (74.5%), yearly income less than $30,000 (39.4%), married or living with a partner (43.2%), heterosexual (90.7%), and employed (69.8%). Mean age of first sexual activity was 19.2 years (SD 3.5). Due to exstrophy, 32.1% reported impairment of daily life. Many (63.0%) hide their diagnosis from peers or coworkers. Participants with poor coping abilities were not more likely to report daily impairment (P=.37), nor to hide their diagnosis (P=.69). The median number of people outside the family that know an individual's diagnosis was 10 (mean 21). The majority of participants were uncomfortable undressing in front of others (77.6%). Many have never masturbated (25.7%), or do so less than once per month (39.2%). While 18% have no anxiety concerning sexual intercourse, almost one-third have a lot of anxiety (31.1%). The majority of the respondents are sexually active (77.6%), with 31 participants who have been pregnant. Of the women who have never been pregnant, 44.8% want to be pregnant now or in the future.CONCLUSION:
Counseling patients with bladder exstrophy regarding psychosexual health issues is important as they transition from pediatric to adult care.