The fate of the adult exstrophy patient

Between 1968 and 1993, 101 patients with bladder exstrophy or incontinent epispadias underwent surgery at our hospital. The standard procedure was ureterosigmoidostomy and additional genital reconstruction. Of the 56 patients who have reached adulthood 45 could be interviewed regarding social integration, sexuality and fertility. All patients have a functioning urinary diversion. Of the 45 patients questioned 41 have completed vocational training or are currently in training, 3 are unemployed and 1 lives at a therapeutic center. Among the patients 29 are married or have a steady partner. All women engage in sexual intercourse and 2 have delivered 3 children by cesarean section. All men achieve erection. Of the 28 men who underwent reconstruction of the external genitalia 11 have a penile deviation, which is distressing in only 2. Only 3 of the men are dissatisfied with the cosmetic result and 33% had epididymitis, necessitating 2 orchiectomies and 3 vasectomies. No patient with reconstruction of the external genitalia can ejaculate normally or has fathered children, whereas all 5 who did not undergo genital reconstruction had normal ejaculation and 2 have fathered children. Male patients with genital reconstruction and closure of the urethra have a high risk of infertility. Our patients demonstrate that the cosmetic results after genital reconstruction are satisfactory. However, in male patients, surgery is performed at the expense of fertility. Because this corrective procedure is usually performed during childhood, the parents must be informed of these consequences before surgical correction.