Sexual Function in Men Born With Classic Bladder Exstrophy: A Norm Related Study

Purpose: We evaluated erectile function in men born with classic bladder exstrophy using a validated instrument and compared results with those in age matched controls. Materials and Methods: A total of 28 patients born with bladder exstrophy were invited to self-administer an Italian version of the International Index of Erectile Function-15 to assess erectile and orgasmic function, sexual desire and satisfaction, and overall satisfaction. A score of 25 or less of 30 in the erectile function domain was considered diagnostic for erectile dysfunction. Scores in patients with bladder exstrophy were compared with scores in 38 normal controls who self-administered the same questionnaire. Results: A total of 19 men (68%) with a median age of 27.1 years (range 18.3 to 41.2) returned the questionnaire, of whom 11 (58%) presented with erectile dysfunction compared to 9 (23%) age matched controls (p = 0.02). Erectile dysfunction was more common in patients with bladder exstrophy who underwent multiple continence surgeries. Orgasmic function was also significantly lower in patients with bladder exstrophy than in controls (p = 0.001). No difference was observed between the groups in the sexual desire, sexual satisfaction and overall satisfaction domains. Conclusions: Patients born with classic bladder exstrophy appear to have erectile dysfunction and decreased orgasmic function more commonly than normal controls, particularly when they underwent multiple continence surgeries. Sexual desire seems comparable to that of their peers. Eventually patients with bladder exstrophy seem to lead a sexual life that is as satisfactory as that of their peers. Like many other congenital chronic conditions, the bladder exstrophy-epispadias complex can cause lifelong serious developmental hurdles and adversity in females and males.1–3 Anxiety about an abnormal body appearance can interfere with normal acceptance of body image and self-esteem, and ultimately impair normal psychosexual development and social life.1–4 Males seem to be more vulnerable and, hence, experience more trouble with starting friendships and partnerships than their female counterparts.5,6 The issue can become particularly relevant from puberty onward. Although some evidence suggests that anxiety never attains the level of a psychiatric disorder,2,7 other evidence suggests that it may.1,6,8 In a recent series 14 of 38 patients with bladder exstrophy (37%) between ages 14 and 24 years had suicide ideation or attempted or completed suicide.9 All of these patients were male. A major concern in male patients with bladder exstrophy is the genital appearance, particularly the size of the phallus, which is smaller than in normal males, and erectile deformity.1,10,11 Sparse objective data exist in the literature about erectile and sexual function in males with bladder exstrophy as they approach adulthood. It is clearly vital to counsel these patients appropriately and perhaps soften their anxiety.IIEF-15 is a standardized questionnaire to assess erectile function.12 It has been used in the general population and in patients with chronic conditions such as chronic liver disease or chronic renal failure as well as in those with a congenital defect leading to chronic disability, such as spina bifida.13,14 We assessed erectile function in men born with classic bladder exstrophy using IIEF-15 and compared results with those in age matched controls. Materials and Methods Between 2004 and 2008, 28 males born with classic bladder exstrophy who were older than 18 years were admitted to our institution. The main reasons for admission were stone treatment in 6 cases, endoscopy in 5, bladder neck surgery in 4, catheterizable conduit revision in 3, bladder augmentation in 3, cosmetic penile surgery in 2, and urethroplasty, urethrocutaneous fistula closure, phalloplasty, assessment before renal transplantation and evaluation after renal transplantation in 1 each. These patients were invited to participate in the study by a pediatric urologist in charge of their care. The study purpose was explained and anonymity was guaranteed. Two age matched controls were enrolled per each patient who consented to participate. Normal volunteers were approached by a pediatric urologist in training and asked to participate in a survey about erectile function in the general population.Two questionnaires were mailed to those who consented to participate with a cover letter containing instructions on how to complete the questionnaire and contact telephone numbers for further information, if deemed appropriate. The first questionnaire was a version of the IIEF-15 validated in Italian. Participants were asked to self-administer it with a 4-week time frame for their response. All 5 IIEF-15 domains were considered, including erectile function (score 0—minimum to 30—maximum), sexual desire (score 0 to 10), orgasmic function (score 0 to 10), intercourse satisfaction (score 0 to 15) and overall satisfaction (score 0 to 10).Those with a score of 25 or less on the erectile function domain were considered to have ED.15 This was further graded according to Cappelleri et al as mild—erectile function score between 22 and 25, mild to moderate—between 17 and 21, moderate—between 11 and 16, and severe—between 6 and 10.15 The 6 questions composing the erectile function domain, namely erection frequency, erection firmness, penetration ability, maintenance frequency, maintenance ability and erection confidence, were also considered separately. In addition to the IIEF-15, a nonstructured questionnaire was administered asking about participant marital status, current partnerships, and sexual life and preferences. For patients with bladder exstrophy information on surgical history and clinical outcomes was collected from clinical charts.Data are expressed as the median and range for age, and the median and IQR for IIEF-15 scores. We compared patients with bladder exstrophy with vs without ED, and patients vs controls. Nonparametric tests were used, including the Mann-Whitney U test for nonpaired continuous values and the chi-square or Fisher exact test for categorical variables with p ≤0.05 considered significant. Results of the 28 eligible patients 19 returned the mailed questionnaire for a 68% response rate. Median respondent age was 27.1 years (range 18.3 to 41.2). The main reasons for hospitalization in these cases was stone treatment in 4, endoscopy in 4, bladder augmentation in 2, bladder neck surgery in 2, catheterizable conduit revision in 2, and cosmetic penile surgery, urethroplasty, phalloplasty, assessment before renal transplantation and evaluation after renal transplantation in 1 each. Table 1 lists patient characteristics and surgical history