February 2022
Why Is Bladder Control Important for Sexual Activity?
Most people with Spina Bifida (about 90–95%) have trouble controlling their bladder and bowels. This is called neurogenic bladder and bowel. Being able to stay clean and dry (called continence) is important for good hygiene and can also affect how someone feels about having a romantic or sexual partner.
For men with Spina Bifida, the nerves that help control the bladder also affect sexual function. If the Spina Bifida is lower on the spine, the nerves may work more normally, and sexual function may also be more normal. If the Spina Bifida is higher on the spine, there may be more challenges.
Some men with Spina Bifida may have trouble getting or keeping an erection. This is called erectile dysfunction (ED). Some may be able to have an erection, but it may not last long enough, or they may have trouble with ejaculation (releasing semen). If the bladder doesn’t close properly during orgasm, semen might not come out the right way, which could make it harder to have children.
If someone is having these problems, a doctor can help with advice or treatment options.
Can Erectile Dysfunction Be Treated?
Yes. Erectile dysfunction (ED) is when a man has trouble getting or keeping an erection. This is common in men with Spina Bifida and also in men without it. Even if someone has ED, they usually still have normal sexual feelings.
The good news is that ED can be treated. Here are some options:
- Pills like Viagra, Cialis, or Levitra – These help with blood flow but still need sexual touch or stimulation to work
- Penile ring – A ring that helps keep the erection once it starts
- Vacuum device – A tool placed around the penis to help draw in blood and cause an erection
- Injections – A shot of medicine into the penis to help with blood flow
- Penile implant – A device placed inside the penis during surgery to help create an erection
Talk to a doctor about which option might be best.
Can Men with Spina Bifida Have Children?
Yes, many men with Spina Bifida can have children. Most men with Spina Bifida make sperm and semen that can lead to pregnancy if it reaches a woman’s egg.
About half of men with Spina Bifida below the L5 level can have children without medical help. Men with higher-level lesions may have more trouble, but it doesn’t mean it’s impossible.
Sometimes, the problem isn’t the sperm, but how the body works. For example:
- Body or bone differences may make it hard to find a comfortable sexual position
- Some men have trouble with ejaculation, or getting semen out during orgasm
- The bladder must close properly during ejaculation so the sperm goes out of the body and not into the bladder. If it goes into the bladder, it’s not dangerous, but it makes pregnancy harder
In these cases, special fertility treatments may help. Ask your doctor or clinic for advice.
Important: Even if you don’t see semen come out, it’s still possible to cause a pregnancy. It only takes one sperm. Always use birth control if you don’t want to become a parent.
Also, both men and women with Spina Bifida who are planning a pregnancy should take 4 mg of folic acid every day for at least 3 months before getting pregnant. This can help lower the chance of having a baby with Spina Bifida.
What About Sexually Transmitted Infections (STIs)?
It’s normal for men with Spina Bifida to have different types of relationships, including straight, gay, bisexual, or transgender relationships.
Sexually transmitted infections (STIs)—also called sexually transmitted diseases (STDs)—can affect anyone who is sexually active. Some STIs can spread even without intercourse. Any contact with someone else’s genitals (private parts), mouth, or anus can pass an infection.
One common STI is called HPV (human papillomavirus). Many people with HPV don’t have any symptoms. Some types of HPV can cause genital warts, and others can lead to more serious health problems. There is now a vaccine that helps protect people from some types of HPV.
Other serious STIs include:
- Syphilis
- Gonorrhea
- Chlamydia
- HIV/AIDS
To help prevent STIs, you should use condoms during sex—especially if you are not trying to have a baby. Condoms protect the penis and lower the chance of spreading infections, but they don’t cover all areas, so they don’t protect everything.
More than half of all sexually active adults in the U.S. have HPV or another STI. That’s why it’s important to:
- Get regular check-ups with your urologist or doctor
- Talk honestly with your doctor about your sexual activity
- Check your genitals (private parts) for any changes like:
- Bumps or lumps
- Sores or bleeding
- Skin that looks or feels different
Tell your doctor about any changes. Catching problems early can help keep you healthy.
Do Condoms Contain Latex?
People sometimes call condoms “rubbers” because many are made from natural rubber latex. This can be a problem for people with Spina Bifida, because some have serious latex allergies.
The good news is that there are non-latex condoms that are safe to use. These are often made from:
- Polyisoprene
- Polyurethane
There are also condoms made from lamb or sheep skin, but those do not protect well against STIs (sexually transmitted infections).
Many men say that polyisoprene condoms feel more natural and are less likely to break, which makes them a good choice for safety and comfort.
Why Don’t Men with Spina Bifida Have Sex as Often as They Want To?
Many men with Spina Bifida think about sex and want a romantic partner. But not all of them have the chance to be in a sexual relationship. This can happen for many reasons, including:
- Trouble with bladder or bowel control
- Difficulty getting or keeping an erection
- Problems with body positioning during sex
- Not getting enough sexual education
- Fewer chances to meet people or make friends
- Low self-esteem (not feeling good about themselves)
- Trouble with thinking or memory, which may be caused by hydrocephalus
- Needing help from parents or caregivers and not being fully independent
Healthy Relationships Matter
Most people have sex and become parents as part of a loving and caring relationship. These relationships are built on trust, honesty, and acceptance from both partners.
It’s important to talk openly with your partner about your feelings, needs, and experiences—even if you don’t end up having sex. A trusting relationship starts with being honest.
You can also talk to your doctor about sex and relationships. Don’t be afraid to ask questions—your doctor is there to help.
Revised by Daniel Wood, M.D., February 2022
This information does not constitute medical advice for any individual. As specific cases may vary from the general information presented here, SBA advises readers to consult a qualified medical or other professional on an individual basis.
