Sexual function in adult patients who have undergone augmentation surgery in childhood: what is really important?

Spina bifida (SB) occurs in approximately 3.5 per 1000 live births worldwide and, due to improved survival, most affected children reach adulthood. Untreated urological problems in SB can lead to substantial renal damage, particularly in those with detrusor/sphincter dyssynergia, underscoring the importance of early bladder and bowel management, including clean intermittent catheterization, to preserve renal function and improve quality of life. Augmentation cystoplasty (AC) is reserved for cases refractory to conservative management and can improve continence by lowering bladder pressure. As SB patients transition from pediatric to adult care, sexual function and fertility remain under-addressed aspects of their wellbeing. Literature on sexual development, desires, and function after AC during adolescence is scarce. This work aims to assess current care and perspectives regarding sexuality in adolescents and adults with SB who underwent AC, by synthesizing viewpoints from experienced clinicians and a patient group representative, to identify key concerns and inform transitional care.

The paper references limited but pertinent literature: high rates of renal damage in inadequately managed SB and correlations with urodynamic risk factors; DMSA scans as tools for assessing renal insufficiency with links to hypertension. AC historically became more common after the advent of clean intermittent catheterization and more recently reduced by intradetrusor botulinum toxin. Quality of life in SB correlates negatively with urinary and especially fecal incontinence. The Global Better Sex Survey suggested sexual satisfaction improvements in a subset of younger women post-intervention, though cohorts are small. Studies by Watanabe et al. and Moreno et al. indicate that urinary reconstruction and continent diversion can improve body image, self-esteem, and sexual activity/satisfaction. Choi et al. reported better female sexual function among those without urinary incontinence. Erectile dysfunction prevalence in SB has been reported up to 75% using the International Index of Erectile Function. Overall, published data on sexual function specifically after AC are sparse, often anecdotal, and lack robust, validated patient-reported outcomes focused on sexuality.

Experts were identified through a literature review and consensus within the Pediatric Urology Group of the European Association of Urology Young Academic Urologists. Four clinicians (RS, DW, RG, AL) with extensive experience in pediatric and adolescent urology were invited by email to provide written responses to structured questions covering: diversion/incontinence and sexual life; impact of stoma on body image and self-esteem; female-specific concerns (fertility, recurrent UTIs); male-specific concerns (anejaculation, erectile dysfunction). Additionally, a patient group representative (mother of a woman with SB and long-standing leader of a patient organization) participated in a telephone interview; her responses were transcribed from German to English following discussion to ensure accuracy. The protocol was approved by the local ethics committee (Hospital of the Sisters of Charity, Linz, Austria; EKS12/17). No patient data were collected; thus, validated sexual function instruments were not applied. The analysis presents thematic synthesis of expert opinions and the counterpoint from the patient representative, contrasted with available literature.

• Consensus that lack of self-confidence and urinary incontinence are major barriers to initiating relationships and engaging in sexual activity in SB patients post-AC.
• Urinary diversion and improved continence can enhance quality of life and may improve sexual life by reducing incontinence burden; fecal incontinence has a particularly strong negative impact on QoL.
• Stoma incontinence is considered uncommon by clinicians; when present, it is usually correctable, but if persistent it may significantly impair QoL and sexual life.
• Body image and scar/stoma cosmesis can affect self-esteem and sexual activity; this concern appears more prominent in females than males. Many patients prefer concealed (umbilical) stomas; some surgeons employ Pfannenstiel incisions when feasible.
• Patient representative emphasized that for women, having a stable partnership may outweigh the impact of surgery or incontinence on sexual fulfillment; men may experience greater shame and are variably likely to seek help without prompting.
• Female-specific points: fertility is often possible; contraception should be routinely discussed. Folic acid supplementation for 3 months pre-conception and during the first trimester is essential. Urine pregnancy tests can have a 57% false-positive rate in patients with cystoplasty; serum HCG is required to diagnose pregnancy.
• Recurrent UTIs in sexually active women post-AC: recommended measures include good fluid intake, regular emptying, clean intermittent catheterization after intercourse, consideration of bladder washouts, and in selected cases postcoital antibiotic prophylaxis or overnight catheterization; some clinicians suggest D-mannose and probiotics despite limited evidence. Address bowel management to reduce UTI risk.
• Additional contextual data cited: SB prevalence ~3.5/1000 live births; up to 75% prevalence of erectile dysfunction reported in SB cohorts using IIEF; small-cohort survey data indicating sexual satisfaction improvement in 26.7% overall (10.9–42.5%), with 66.7% of women under 45 reporting improvement in one dataset, highlighting limited evidence.

The synthesis indicates that, in SB patients who underwent augmentation cystoplasty, the primary determinants of sexual wellbeing are continence status, body image, and self-confidence. Improved urinary control through diversion/reconstruction likely benefits sexual activity by mitigating embarrassment and logistical barriers associated with incontinence. The stoma’s functional reliability appears more critical than its appearance, yet cosmetic considerations can influence self-esteem, particularly among women. There may be gender differences in how shame, partnership dynamics, and cosmetic concerns affect sexual health, suggesting a need for tailored counseling. Clinicians should proactively address sexual function, contraception, fertility planning (including folic acid and pregnancy testing nuances), and UTI prevention strategies in routine follow-up. The paucity of robust data underscores the need for validated PROMs capturing sexual function and body image in this population to guide evidence-based transitional care.

Sexual health in adults who underwent augmentation cystoplasty in childhood is shaped by continence, body image, and self-confidence. Stoma incontinence is uncommon but impactful when present; cosmetic concerns, while variable, tend to be more significant for females. Urinary diversion that improves continence can enhance sexual life. Clinicians should systematically discuss sexuality, contraception, fertility planning (including folic acid and accurate pregnancy testing), and UTI prevention with postpubertal patients at every visit. Future research should employ validated, disease-specific PROMs to quantify sexual function outcomes, explore gender-specific differences, and evaluate interventions (surgical, counseling, and medical) that may improve sexual wellbeing.

Findings are largely based on expert opinion and a single patient representative’s perspective, without primary patient-level data. Evidence in the literature is limited, often anecdotal, and derived from small cohorts. Cultural and individual variability may limit generalizability. No validated sexual function instruments were applied in this work, restricting quantitative assessment of burden and outcomes.