Long-term Sexual Outcomes in Classic Bladder Exstrophy: Insights from Standardized Scores

Only 12% of men with repaired bladder exstrophy were satisfied with genital appearance; 43% of women met criteria for sexual dysfunction

Journal: Journal of Pediatric Urology | Published: 2025-12-26 | Type: Retrospective cohort | PMID: 41549041 Authors: Abdellaoui S et al., Hospices Civils de Lyon (pediatric urology and adult urology services collaborating on long-term outcomes) Funding/COI: Funding not listed; no conflicts of interest disclosed

Summary

Classic bladder exstrophy (CBE) is a rare congenital condition requiring extensive urogenital reconstruction from birth. This Lyon single-center retrospective study followed 42 adult patients who completed validated sexual function questionnaires after a median of roughly two decades post-repair. Satisfaction with genital appearance was strikingly low — particularly in men — and roughly a third of sexually active men met the scoring threshold for erectile dysfunction. The authors themselves conclude the standard instruments used may not be fit for purpose in this population, which undercuts some of their own quantitative conclusions.

Claims

• 22 men and 20 women (of 63 eligible) completed questionnaires; median age at assessment was 23 years in men, 28 in women
• 54.5% of men were sexually active; of those, 33.3% had ED by IIEF-5 criteria (score <22)
• 65% of women were sexually active; 42.6% met criteria for female sexual dysfunction (FSFI <26.55)
• Satisfaction with genital appearance: 37.5% in women, 11.8% in men
• Fertility: 66.7% of sexually active women became pregnant; 7 delivered 9 children; only one man fathered children naturally (2)
• 63.6% of men required additional urethral surgeries beyond initial epispadias repair; Ransley-Cantwell technique was the primary repair approach

Study Quality

This is a retrospective single-center cohort with a small sample — 42 questionnaire completers drawn from 63 eligible patients — meaning a 33% non-response rate that is not characterized or addressed. The use of FSFI and IIEF-5 is methodologically appropriate for general populations, but the paper's own conclusion flags that these tools may poorly capture the specific anatomical and functional context of CBE, which muddies interpretation of the dysfunction prevalence figures. Follow-up duration is a genuine strength: median 21–26 years gives a realistic adult picture of pediatric surgical outcomes. However, with no control group and no adjustment for age, relationship status, or surgical technique variation, the dysfunction rates cannot be cleanly attributed to CBE versus background population rates.

The ED prevalence of 33.3% applies only to sexually active men — a denominator that itself represents just 55% of the male sample. The true ED burden across all men with CBE in this cohort is unknowable from the data presented.

Red Flags

• 42 completers from 63 eligible; non-responders not characterized — selection bias likely favors men and women with better function
• All findings are IIEF-5/FSFI scores in a population for whom the authors concede these tools may be inappropriate — the dysfunction prevalence numbers are built on a questionable foundation
• Single center (Lyon), single surgical tradition; results may not generalize across different repair techniques or centers
• Retrospective design; no control group; no multivariate analysis of predictive factors despite listing it as a secondary objective
• Denominator shifting throughout: 63 eligible → 42 completed → 22 men → 12 sexually active men with IIEF scores; each step narrows and the analysis does not account for this cascade
• Funding source not disclosed; this is a minor concern given the non-commercial subject, but it's an incomplete record

Strengths

• Long follow-up (median ~21–26 years) provides adult-stage outcome data for a pediatric intervention — rare and valuable for this condition
• Both sexes included with sex-specific validated instruments
• Part of the larger QUALEXSTRO study, suggesting broader follow-up infrastructure exists
• Honest about the limitations of existing instruments and calls for disease-specific tools — an appropriate methodological critique of their own work
• Provides fertility data, which most sexual function studies omit

Verdict

A small, methodologically limited study of a rare condition, but it fills a genuine gap: long-term adult sexual outcomes after CBE reconstruction are poorly documented, and data on this scale simply do not exist in abundance. The headline finding — genital appearance satisfaction of 12% in men — is striking and clinically meaningful regardless of the instrument debate, since it does not depend on IIEF-5 validity. The sexual dysfunction prevalence figures, however, should be treated with caution: the authors built them on tools they admit may be wrong for this population, applied them to a self-selected subset of respondents, and never compared them to normative data. Worth reading if you work in pediatric reconstructive urology; not worth citing as prevalence evidence without heavy caveats.