Survey identified some degree of erectile dysfunction in 94% of sexual active adults with the disease.

With medical advances in spinal-closure techniques, shunting procedures for hydrocephalus, and renal preservation, a child born with spina bifida (SB) today has a 75%-90% chance of reaching adulthood.

As a result, more males with SB are reaching sexual maturity and transitioning from pediatric to adult urologists. These individuals are in need of urologic care. Research relating to sexual health in this population is lagging, and issues regarding sexuality, erectile dysfunction (ED) and treatment, fertility, and paternity need to be addressed to better care for and advise these patients.

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Sexual education lacking

Sexual education is delayed in these patients compared with peers without SB. “Males do want information and intervention, so adult urologists need to become familiar with the issues in this population,” states Timothy Brei, MD, medical director and chief advisor of the Spina Bifida Association.

“This not only includes issues of erection from a treatment standpoint,” Dr. Brei continues, “but also assistance with male fertility, paternity, fathering issues, and birth control options that do not involve latex.” In a study of young adults with SB, 95% stated that they had inadequate knowledge of sexual health as it relates to SB. Only one third had discussed sexuality issues with a doctor, but 93% and 100% or patients and parents, respectively, would discuss these topics if initiated by their doctor (Dev Med Child Neurol. 1999;41:671-675).

ED is a clear problem in males with SB. Erections appear to be dependent on the level of the spinal lesion; men with lesions below T10 have markedly higher erection rates (Br J Urol. 1986;58:434-435). Only 14% of patients with lesions above T10 have erections, and there is controversy, with some specialists believing these are merely reflexive and not sexual in nature.

Even in patients with low lesions who are capable of obtaining erections, approximately 75% are dissatisfied with penile rigidity. Difficulty in maintaining erections is also a major component to ED in these men, based on International Index of Erectile Function (IIEF) surveys (Urology. 2006;67:566-570). According to results we obtained using the Sexual Health Inventory in Men (SHIM), 88.9% of adult males with SB who were sexually active felt their erections were not firm enough and 77.8% had difficulty maintaining erections. Only 28% felt good about their sex life, indicating an area in which urologists can favorably intervene.

As in all men with ED, treatment of ED in men with SB is important to several aspects of sexuality. Fortunately, males with SB appear to respond to conventional ED management. Sildenafil, a phosphodiesterase type 5 (PDE5) inhibitor, was shown to be effective in men with SB and ED: 80% of patients responded in a dose-dependent manner with the best efficacy at the 50-mg dose (Lancet.1999;354:125-126).

Duration of erections, a primary concern in these patients, increased 266%. More aggressive maneuvers, such as ilioinguinal nerve transposition to the dorsal nerve of the penis to increase penile sensation, have also shown encouraging results (J Urol. 2006;176:1086-1090). These patients reported feeling less handicapped, and as a result, the penis became more integrated into their body image.

Fortunately, invasive surgery is not necessary for all men with SB. Because most of these patients have functional upper extremities, inflatable and malleable penile prosthetics are also expected to have satisfactory results in improving sexual satisfaction and would be an acceptable alternative if medical management fails. There are, however, no data to confirm this assumption, nor are there data examining the use of injectables, vacuum erection devices, or urethral alprostadil.