Spina Bifida: Sexuality Education


Media Type

Info Sheet

Reviewed Date

Feb 23, 2018


It is common to have questions and concerns about sexual maturity, sexuality, and relationships.

More than 95% of patients interviewed with spina bifida say that they need more information about sexuality and fertility.

Precocious Puberty

Adolescents with spina bifida typically begin puberty earlier than their peers .

• Hydrocephalus can cause changes in parts of the brain that control hormones, leading to early puberty.
• Adolescent women with Spina Bifida may begin menstruation 1–2 years before their peers.

Erectile dysfunction and decreased sensation is very common with spina bifida.

• Penile function varies according to the level of spinal cord damage resulting from myelomingocele.
• Psychogenic erections are triggered by sexual thoughts or seeing or hearing something stimulating.
• Reflex erections are created by touch to the penis or genital area.
• The nerves controlling these impulses can be interrupted by the spinal cord lesion and cause erectile dysfunction.

There are many treatment options for erectile dysfunction that are appropriate for spina bifida patients and they should be discussed with a physician.

• Medication, injections, pellets, pumps, and implants are all possible treatment options. Viagra has been shown to help men with spina bifida and erectile dysfunction in maintaining erections.
• Treatment for erectile dysfunction has side effects, such as prolonged erection, that can damage penile tissue.

Patients with higher spinal lesions may be unable to ejaculate and be infertile.

• Ejaculation is controlled by the sympathetic nervous system, so a disruption in those nerve fibers by the myelomeningocele can cause an inability to ejaculate or retrograde ejaculation.
• There are effective treatment options to discuss with your physician.


Vaginal sensation and pelvic floor strength can be impaired depending on the level of myelomeningocele.

• Many women experience a loss of vaginal muscle control and are unable to produce vaginal lubrication. Vaginal lubrication is both psychogenic (thoughts) and reflexogenic (touch) in response to something stimulating.

• Using over the counter, water–based lubricants, such as KY Jelly, can effectively treat vaginal dryness.

Female fertility is generally not affected by spina bifida.

• Contraception should be used to prevent unwanted pregnancy.

Careful hygiene should be practiced when menstruating and surrounding sexual activity to decrease incidence of urinary tract infections.

• Precaution should be taken when using a catheter after sexual activity to limit bacterial introduction into the bladder.


Patients with spina bifida should use latex–free condoms.

• 40%–60% of patients with spina bifida have a latex allergy.
• Natural or lambskin condoms contain small pores that can transmit viruses such as HIV and hepatitis.

When considering oral contraceptives it is important for patients to discuss options with a physician.

• Contraceptives composed of progesterone can worsen osteoporosis and should be avoided by patients with low bone mineral density.
• Contraceptives composed primarily of estrogen can increase the chance of a blood clot and should be avoid by patients with limited mobility.
• Intrauterine devices should be avoided if a woman has chronic urinary tract infections for to decrease the risk of pelvic inflammatory disease, which could be more difficult to sense.
• As for all female patients oral contraceptives are not recommended for patients with a history or increased risk for blood clots, smoking, headaches, and cardiovascular disorders.

• Incontinence can lead to apprehension regarding sexual activity.
• Incontinence during orgasm or sexual stimulation can be avoided by emptying the bladder and bowel prior to sexual activity.

References :
Joyner BD, McLorie GA, Khoury AE. Sexuality and reproductive issues in children with myelomeningocele. Eur J Pediatr Surg. 1998; 8(1):29–34.

Sawin KJ, Buran CF, Brei TJ, Fastenau PS. Sexuality issues in adolescents with a chronic neurological condition. J Perinat Educ. 2002; 11(1):22–34.

Visconti D, Noia G, Triarico S, Quattrocchi T, Pellegrino M, Carducci B, De Santis M, Caruso A. Sexuality, pre–conception counseling and urological management of pregnancy for young women with spina bifida. Eur J Obstet Gynecol Reprod Biol. 2012 Apr. [Epub ahead of print]

Vylder A, Driel MF, Staal AL, Schultz WC, Nijman JM. Myelomeningocele and female sexuality: an issue? European Urology. 2004;46:421–7.


This content is for informational purposes only. It does not replace the advice of a physician or other health care professional. Reliance on this site's content is solely at your own risk. Shirley Ryan AbilityLab disclaims any liability for injury or damages resulting from the use of any site content.  © 2017 Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago). Henry B. Betts LIFE Center – (312) 238-5433 –

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Spina Bifida: Sexuality Education


Lindsey Graff

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