Abstract
Problems relating to the development of a healthy approach to sex and intimacy during puberty, after augmentation cystoplasty, are scarcely discussed in literature. Therefore, this may suggest that such issues are insufficiently addressed by pediatric urologists. We gathered four experts in the field as well as an experienced leader of a patient group and mother of a girl with spina bifida and asked questions relevant to the following areas of care: (a) diversion, urinary incontinence, and sexual life; (b) impact of a stoma on body image perception and self-esteem; (c) specific female concerns with regard to fertility and recurrent urinary infections; (d) specific male concerns on anejaculation and erectile dysfunction. Their answers are discussed in view of the available literature. All experts and the patient group representative agreed that most of these patients will experience: lack of self-confidence as the most frequent obstacle to starting a relationship and incontinence as a barrier to sexual activity. The cosmesis of the stoma and abdominal scars might influence self-esteem and therefore the sexual activity, however it appears to be a less common concern in males than females. Our results outline the importance and influence that the body image, self-esteem, and confidence present for the individual expectations of the patients related to sex life and sexual activity. Physicians should be encouraged to ask all postpubertal patients about their sexual concerns at every visit. Further studies and exchange of information between clinicians are needed to provide meaningful and analyzable patient-related outcome measures (PROMs).
Highlights
Spina bifida (SB)—the incomplete closure of the neural tube at ~26 days of gestation, occurs in 3.5 per 1000 live births worldwide [1] due to improvement in overall survival, nowadays, >80–95% of children with SB live into adulthood, this improvement in overall survival is likely to be secondary to advances in healthcare [2]
In a study looking at 104 adult SB patients without previous adequate urological management, a overall rate of 26% of kidney damage on dimercaptosuccinic acid (DMSA) scans was found, its frequency was associated with high leak point pressure (>40 cmH2O), decreased functional bladder capacity as well as detrusor overactivity during [6]
We have found that patients who have undergone Augmentation cystoplasty (AC) and have developed issues around sex during puberty such as the development of sexual desires are scarcely discussed in literature [15]
Summary
Spina bifida (SB)—the incomplete closure of the neural tube at ~26 days of gestation, occurs in 3.5 per 1000 live births worldwide [1] due to improvement in overall survival, nowadays, >80–95% of children with SB live into adulthood, this improvement in overall survival is likely to be secondary to advances in healthcare [2]. Up to 48% of SB patients with untreated urological problems had evidence of kidney damage [3]. [3] The incidence of renal damage still reaches almost 100% in patients with an overactive pelvic floor (detrusor/ sphincter dyssynergia; DSD) who are not properly treated and appears within the first 6 months of life [4]. An early management initiated directly after birth helps convert a high-pressure bladder based on neuropathic detrusor/ sphincter dyssynergia into a low-pressure reservoir that is safe for the upper urinary tracts of the SB patients [5]. In a study looking at 104 adult SB patients without previous adequate urological management, a overall rate of 26% of kidney damage on dimercaptosuccinic acid (DMSA) scans was found, its frequency was associated with high leak point pressure (>40 cmH2O), decreased functional bladder capacity as well as detrusor overactivity during [6]. DMSA scans performed in adolescent patients with SB are an accurate tool to assess for renal insufficiency and their results correlate with arterial hypertension [7]
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