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Spina bifida is a neural tube defect that prevents a baby’s brain, spinal cord, or meninges (membranes that protect the brain and spinal cord) from developing properly in the womb. The condition can vary in severity. Some people with spina bifida have very few symptoms. Others may become paralyzed and experience urinary and bowel incontinence.

Women with spina bifida often have sexual problems. They may have poor vaginal lubrication, pain, less sexual sensation, and difficulty with orgasm. They might also feel anxious about sex, feel insecure about their body, and worry about being rejected by a sexual partner.

However, women with spina bifida can still have satisfying sexual relationships. In a July 2020 Journal of Sexual Medicine study, researchers interviewed sexually active women with spina bifida and asked what sexual advice they would give to others in their situation.

Here are some of the women’s suggestions:

Before starting a sexual relationship with someone, get to know them well so that you can feel more relaxed and comfortable. Make sure your partner respects you.
Communicate with your partner. Explain how spina bifida can affect sexual intercourse so that your partner understands what may happen (such as urinary and bowel leaks). If something is uncomfortable or painful, let your partner know and talk about ways to make it better.
Don’t hesitate to tell your partner what is especially exciting or pleasing, too.

Prepare for sexual encounters. This might mean emptying your bladder or bowel before having sex or watching your diet on the days you might be intimate. Some women also recommend mattress protectors and have wipes nearby to clean unexpected leaks.
Many people with spina bifida are allergic to latex, so it is important to have non-latex products (such as condoms) ready before sex. Sometimes, these items are hard to find, so it helps to plan ahead.
Experiment with different sexual activities and positions. It may take some time to determine which positions are most comfortable for you. Also, consider exploring your own body through masturbation to discover which areas are most responsive to touch. You might find that you enjoy being touched in non-genital areas. Share your discoveries with your partner.

If you’re coping with spina bifida and its effects on sexuality, don’t be afraid to ask for help if you need it. Learning about your sexual self and communicating with sexual partners isn’t easy for everyone. Seeing a counselor can help you work through anxiety or poor self-esteem. A sex therapist may help you and your partner develop more effective communication skills.

Resources

The Journal of Sexual Medicine

Streur, Courtney S., MD, et al.

“ ‘I Tell Them What I Can Feel and How Far My Legs Can Bend’: Optimizing Sexual Satisfaction for Women With Spina Bifida”

(Published: July 11, 2020)

https://www.jsm.jsexmed.org/article/S1743-6095(20)30667-6/fulltext

Streur, Courtney S., MD, et al.

“Optimizing Sexual Satisfaction for Women With Spina Bifida: A Qualitative Study”

(Abstract 196. Published: January 1, 2020)

https://www.jsm.jsexmed.org/article/S1743-6095(19)31712-6/fulltext

National Institute of Neurological Disorders and Stroke

“Spina Bifida Fact Sheet”