By Alice || Edited by Go Ask Alice Editorial Team || Last edited Apr 19, 2024
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Alice! Health Promotion. "How may having spina bifida affect sex?." Go Ask Alice!, Columbia University, 19 Apr. 2024, https://goaskalice.columbia.edu/answered-questions/how-may-having-spina-bifida-affect-sex. Accessed 24, May. 2024.

Alice! Health Promotion. (2024, April 19). How may having spina bifida affect sex?. Go Ask Alice!, https://goaskalice.columbia.edu/answered-questions/how-may-having-spina-bifida-affect-sex.

Dear Alice,

I'm 20 years old. I have spina bifida and I can walk perfectly normal but I have incontinence with my bladder. I get a lot of urinary tract infections, too. I've been with my boyfriend for 3 years now. I am kind of worried about having sex with him because I always pee myself. I was wondering what I should do to stop getting these infections so I get be comfortable during sex and not have to think that I will pee on the bed.

Dear Alice,

I have been friends with a guy who has spina bifida for a while now, and recently, things took a turn for the better — we are just starting a relationship. I know that he has sensation below his waist, and can get an erection, but I wondered if there is anything about how his disability will affect our sex life. I am anxious for it to be pleasing for both of us, and although we are open enough for me to ask him questions, I would like to go in prepared so to speak! Is there anything that will be able to help me in making sure that the first time for us won't be awkward, uncomfortable or downright crap?!

From,
Planning for Sex

Dear Reader and Planning for Sex, 

It seems like you’re both interested in learning more about sex with Spina Bifida (SB), though from different perspectives. Having SB yourself or being with someone who has SB shouldn’t be what limits you when it comes to sexual endeavors. Communicating about your urinary concerns with a partner and switching up positions are just a few of the ways you can continue to have a thriving sex life.  Whether you have SB and want to know more about how to deal with bladder incontinence and infections or are curious about how your partner’s SB might affect their sexual function, read on to find out more. 

SB occurs when an individual’s spinal cord doesn’t develop completely in the womb. Among other things, this complicates communication between the brain and the bladder and can make it difficult to control the urge to urinate—while your brain may know not to pee, your bladder doesn’t always get the memo. 

If you do pee during sex, try not to be too hard on yourself. You may be comforted to know that peeing during sex is more common than you might think. Even among people who don’t have spina bifida, many individuals unintentionally pee during sex. Penetrative sex can put pressure on the bladder, which can increase the need to tinkle. But if you’re uncomfortable with the idea of peeing during sex, there are a few things you can try that might reduce the risk: 

  • Let loose. It might not always be possible, but you might try using the restroom before sex in order to empty your bladder. If you are able, peeing before sex may decrease the likelihood of peeing in bed. 
  • Pad up! You might also feel more comfortable during sex if you lay a single-use mattress pad on your bed. This way, if you do happen to urinate, the liquid can be more discreetly absorbed, and won’t damage your bedding. 
  • Get your wipe on. Keeping wipes by the bed may also be helpful for quick clean-ups. 

If your incontinence continues to inhibit your ability to have sex the way you’d prefer, you might consider working with a urologist (a doctor who works with all things urinary tract-related). There are a variety of things you can try, ranging from lifestyle changes to surgical interventions, and a health care professional can help you find the right treatment for you. 

When it comes to infections, for people with SB, emptying the bladder completely can be difficult due to decreased bladder sensation. If urine remains in the bladder for too long, it creates an environment where bacteria can grow easily, which can result in urinary tract infections (UTIs). As you may have experienced, chronic UTIs can be very frustrating in addition to being physically uncomfortable. You might consider working with a urologist or other health care professional to get these infections under control and discuss appropriate ways to prevent them. 

In the meantime, there are a few things you can keep in mind to avoid making symptoms worse. It’s recommended to avoid having sex when you’re actively infected because doing so can make the infection worse. If you have a vulva, it’s also recommended to always wipe front-to-back, to keep bacteria away from the urethral and vaginal openings. If possible, you might also try peeing after sex to decrease the likelihood of developing a UTI. 

Beyond incontinence and infection, some people with SB experience other difficulties surrounding sex. Some people experience decreased genital sensation, difficulty getting an erection, or difficulty reaching an orgasm. It might be empowering to know that sexual function or dysfunction doesn’t indicate sexual enjoyment. Just because you or your partner might unintentionally urinate in bed or experience other SB-related difficulties, doesn’t mean that you can't find satisfaction in your sexual relationships. Many individuals with SB, regardless of the degree of disability, have fulfilling sexual relationships. 

As with any relationship concern, communicating with your partner(s) can help clarify how both of you are feeling and help to build trust. Being able to communicate openly about the possibility of peeing may decrease your anxiety and make you feel more comfortable overall. You might also find it helpful to talk about your sexual preferences and boundaries. For example, many people with SB have latex allergies, so it’s wise to speak with your partner(s) about other viable methods of contraception. 

Continuing in the vein of communication; talking with others might be the way to go, and not just with your partner(s). You might also find it helpful to speak with other people living with SB or partners of people with SB. Learning from others who have also gone through some of the same challenges and experiences may help you find new tips and tricks. For example, some people with SB have found that it’s easier for them to have sex while lying on their stomachs. Or you might find other intimate activities that can keep you and your partner close if certain activities don’t work for you. 

Best of luck getting it on! 

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