THE FATE OF THE ADULT EXSTROPHY PATIENT

Between 1968 and 1993, 101 patients with bladder exstrophy or incontin ent epispadias underwent surgery at our hospital. The standard procedu re was ureterosigmoidostomy and additional genital reconstruction. Of the 56 patients who have reached adulthood 45 could be interviewed reg arding 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 une mployed and 1 lives at a therapeutic center. Among the patients 29 are married or have a steady partner. All women engage in sexual intercou rse and 2 have delivered 3 children by cesarean section. All men achie ve erection. Of the 28 men who underwent reconstruction of the externa l 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 no rmally or has fathered children, whereas all 5 who did not undergo gen ital reconstruction had normal ejaculation and 2 have fathered childre n. Male patients with genital reconstruction and closure of the urethr a have a high risk of infertility. Our patients demonstrate that the c osmetic 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 childhoo d, the parents must be informed of these consequences before surgical correction.