Spina Bifida and Sex

YES!!! People with Spina Bifida can have sex!!! Shocking revelation, I know!!!! :-P In fact, many of us (yes, I said US...I'm including myself in this one!) have GREAT sex lives in and outside of marriage and have families of our own. All people have a right to a full sexual life. Sex and reproduction are increasingly important for young people as they reach adulthood and beyond.

Sexual performance and spina bifida: The facts

• The nerve damage in spina bifida that affects urinary and bowel functions may also affect sexual functioning.
• Males may have normal sexual function, but this is commonly affected to some degree. Satisfactory erections are often possible, but there is no ejaculation. Other types of sexual dysfunction are also possible.
• Females are generally less affected in their sexual functioning.
• In males and females, altered genital sensation can affect - but does not prevent - arousal patterns and sexual functions.
• Orthopaedic problems, for example with lower limbs, can affect the ability to use some, but not all, sexual positions.
• Most males and females with spina bifida are fertile. Many of the issues surrounding conception in spina bifida are due to mechanical and anatomical difficulties in conceiving rather than a lack of fertility. There is access to assisted reproductive techniques. Consult your clinic about these.
• Since people with spina bifida often have latex allergies, you and your partner may need an alternative form of contraception to condoms. See your doctor for advice about forms of contraception.
• The major obstacles to a happy sex life are:

- lack of confidence and self esteem
- not meeting people
- no car
- not seeing ‘sex’ as being possible
- incontinence -- the same nerves that control urinary function also control sexual function. Therefore, if one has poor sensation, the other will also. It is very important to have an understanding partner and to communicate clearly about the possibility of urine or stool leakages during sex. Decrease the risk by emptying your bladder and bowels beforehand. This should take care of most of the urine and stool at risk for being accidentally released during sex. In case there is some leakage during sex, have a moist towel nearby to wipe it away. For more information, review SBA’s health information sheets on women’s and men’s health issues. 

- gaining independence from your parents.

Sex and spina bifida: Important questions and positive answers:

I don’t want to discuss sexuality in front of my parents. I’m too embarrassed.

This is a common concern.

A supportive environment is essential.

You should feel free to ask your doctor or continence nurse for any information about your own sexual functioning when consulting them for routine assessment.

Remember, these professionals have a lot of experience in dealing with sexual issues and will understand any concerns you may have.
The best people to speak to about sexuality, relationships and achieving a meaningful sex life are adults with spina bifida who have ‘been there and done that’.

When you first start to talk about sex it will be embarrassing, but after a while you will realize that it’s good to do so and that it will help you help yourself!

What about the way my body is ‘different’ from other people’s?

The issues of body image and self esteem that arise in spina bifida profoundly influence a person’s sexual expression.

Remember, people with profound disabilities are capable of active sex lives.

Be reassured. Stephen Hawking the famous physicist, has overcome a great physical disability. He has fathered children.

Could my baby have spina bifida?

Yes. If you or your partner have spina bifida your risk of having a child so affected is much greater. Did you know that folate (a safe vitamin) taken by women before and during pregnancy could significantly protect against spina bifida?

Genetic counselling is very important for both men and women who want to have a child. A genetic counselor will explain the risks and the ways of protecting your baby from getting spina bifida and what screening tests can be done during the pregnancy. Your doctor can arrange for you and your partner to see a genetic counselor before you get pregnant.

Sex and spina bifida: Important questions and positive answers for men

Can males with spina bifida father children?

Yes, of course. Many men with spina bifida are fathers.

Less is know about fertility in men with spina bifida than in affected women.

Men typically have problems with sexual function, which can be overcome.

Most men are fertile and can successfully father children.

What difficulties do men with spina bifida have during intercourse?

The major difficulty is achieving erections and ejaculation.

Difficulty in achieving erection is a common problem and is often easily treatable. Drugs, including Viagra, or injections often work. Physical techniques such as vacuum pumps or surgery are available. If you have difficulty with erections, you should not give up the idea of having sex until you have looked at treatment options.

Ejaculation is often impaired in men and achieving ejaculation is more difficult. Did you know that failure to ejaculate will not have any effect on the pleasure you give your partner?

There are safe methods of artificially collecting sperm which can be used to make your baby. This can be explained to you by a specialist.

Many young inexperienced guys worry that leg weakness will impair their sexual performance using the missionary position (on top). There are many other positions which can be used. Did you know that using these positions will not reduce the pleasure you give your partner?

Getting and Keeping an Erection 

This may be caused by your Spina Bifida or other conditions such as diabetes but can also 

be affected by whether you are feeling anxious, self-conscious or tired. Different 

treatments are available depending on the type of difficulty you’re having. Your doctor 

may want you to have a blood test to check your levels of testosterone, a hormone which 

can affect your body and feelings in different ways. The effects of some medication, 

nicotine and drug use can also be important. 

Treatments can include: 

Injections: 

Some treatments are given into the penis by injection. Prostaglandins, such as Alprostadil, 

have a high success rate with a quick response and few interactions with other 

medication. 

Papaverine has a lower success rate. Such treatments may be given at spinal injury units, 

urology clinics, or rehabilitation centres. You, or your partner, can learn to give these 

injections. There may be a risk of scarring, and the penis becoming misshapen (called 

priapism) or having a prolonged erection. There may be medical reasons why treatment is 

not suitable in your case. 

Alprostadil can also be given without injection, as a pellet in the urethra (Muse) but this has 

a much lower success rate and can also cause priapism, pain in the penis, and irritation to 

your partner’s vagina/mouth. 

Drugs: 

Such as Viagra and Cialis are available on prescription in limited amounts for people with 

Spina Bifida. A doctor who knows you will know whether there are any particular risks (such 

as a history of heart disease) for you in taking these and it is important for you to have a 

thorough physical examination in the area of your genitals to check there are no problems 

before starting to take them. They are available to buy privately on the net but you are 

advised not to do this – you may not always get the genuine article. There is some 

evidence that these have also boosted the sexual confidence of men with Spina Bifida 

using them. You need to take them at least 20-30 minutes before you hope to have 

intercourse and they will not work on their own: you need to have the usual foreplay to 

help you become aroused. If they don’t seem to work for you, try them out on three 

separate occasions before giving up and check with your doctor whether a different dose 

can be tried.

Vacuum devices: 

The penis is placed in a tube in which a vacuum is artificially created and blood is drawn 

into the penis, giving an erection. A constricting band is placed on the base of the penis to 

hold the blood in the penis and help the erection to last. They give a softer erection but 

enough for penetrative sex. They can be fiddly to fit and need practice and persistence. 

Newer models have an electric rather than a manual pump. If you have reduced 

sensation, you should not leave one on too long and should check your skin and pressure 

areas around the penis. Some vacuum devices are available on prescription from a GP. 

Some men, who can get a partial erection but want to maintain it, use just the ring part of 

the device and you can buy something similar in sex shops but need to be sure that you 

have the right size. 

Surgical implants: 

These are usually a last resort and you would need to be fit for surgery which would be 

carried out by a urologist. Older models involving a silastic (like flexible plastic) implant into 

the penis give you a permanent erection allowing penetration but not sensation or 

ejaculation. Newer models into the groin and penis allow you to press part of the implant in 

the groin to give an erection when needed and release it afterwards. Again they do not 

improve sensation or ejaculation. 

Premature Ejaculation 

This is ‘coming’ earlier than you’d like. When you’re masturbating, this may not matter so 

much to you but, if it is a problem for you or your partner, you may be helped by learning 

to understand your body signals or through some counselling or behavioral therapy. 

Medication may be considered as part of managing the problem. You may be able to find 

help with this through a local specialist clinic or Spinal Injuries Unit or through your urologist 

or urology nurse specialist. 

Slow Ejaculation 

When you’re unable to come to orgasm or it takes an age. Again, this may not happen 

when you’re masturbating and it might be caused by Spina Bifida or by how you’re feeling 

or a mixture of both. In some cases it may be caused because the nerve supply is 

damaged so that you don’t get the contractions that lead to orgasm or get the full 

sensation of orgasm. Again, remember that many people who have difficulty with 

penetrative sex can still have very good sex lives, finding pleasure in other areas of the 

body.

Retrograde Ejaculation 

This is when semen goes back into your bladder instead of out through your penis. It 

doesn't do any harm but can make your urine look cloudy when you next empty your 

bladder. It might be important for you if you hope to have children, and there are 

alternative ways of collecting your sperm. (See Fertility below). 

Fertility 

There are many proud fathers with Spina Bifida but, if you’re worried about this, you need 

to discuss it with your GP, urologist or other specialist who may run some tests to check that 

all is well with your sperm count. If it’s low or if you have difficulties with retrograde 

ejaculation (above) you may need to ask about referral to a specialist sexual health or 

fertility clinic or Spinal Injuries Unit. 

Golden rule:

Men with spina bifida can have great sex lives and can give their partners as much pleasure as guys without disability.

Sex and spina bifida: Important questions and positive answers for women:

Do I have a normal sexual response which is the same as for a woman without spina bifida?

Yes. Although women with spina bifida often report different vaginal sensation, this is not an obstacle to normal sexual responsiveness or your capacity to give pleasure to your partner.

Can women with spina bifida bear children?

Yes. Of course. Many women with spina bifida are mothers. Generally, fertility is not affected in women. In fact, it is important to use contraception to avoid an unplanned pregnancy.

Did you know that a study of women with spina bifida in Victoria found that although special intervention is sometimes needed, pregnancy and child birth is not tremendously difficult and does not do damage to, or worsen, mobility, continence, functioning or shunt function.

There are obstetricians (specialists who care for pregnant women and deliver babies) with experience in spina bifida who can advise and care for you. Your doctor can refer you and your partner to a specialist for advice before you become pregnant as well as for the pregnancy.

I am in a stable relationship and would like to have a child. How will spina bifida affect my pregnancy?

As described above, the course of pregnancy for you is similar to women without spina bifida except for:

• an increased risk of urinary tract infection
• the risk of pressure sores - from the extra weight you are carrying
• an increased risk rate of lower pelvic pain.

Should I have a vaginal or caesarean delivery?

The current recommendation is that you should be encouraged to deliver vaginally. It has been noted that women who have vaginal deliveries have fewer complications, faster recovery times and shorter hospital stays.

Women delivered by caesarean have a higher rate of complications, and surgery can be complicated if there is past history of urological surgery. Your specialist will recommend the best course for you to take.

Golden rule:

Women with spina bifida can have great sex lives and can give their partners as much pleasure as women without disability.

****************************Contraception*****************************************
If you are using condoms, remember to get latex-free ones – available from Durex or Trojan.
SAFE SEX is important for everyone, straight or gay, male or female, and whether you’re having 
full intercourse or oral sex. You are as likely as anyone else to pick up a sexually transmitted 
disease but, if you have reduced feeling, may not recognize it as quickly. Again 

remember to use latex-free condoms to avoid any possible allergic reaction.

There are natural skin condoms, however natural animal skin (i.e. lamb/sheep skin) condoms ONLY help prevent pregnancy as sperm cells are too big to pass through the skin membranes. Animal skin condoms have larger microscopic openings and may allow the organisms that cause STDs (i.e. HIV) to pass through which can infect a sexual partner.

****Do NOT use animal skin condoms to help prevent transmission of STD's or HIV.****

If you or your partner are allergic to latex or on latex precautions, the only full proof protection against pregnancy and/or STD transmission when using a non-latex condom is using one made out of polyurethane or polyisporene.

Durex makes a non latex condom called Avanti. Avanti is made from polyisoprene and Trojan has a polyurethane condom called Trojan Supra.

Information used for this article was obtained by:

http://www.sbhi.ie/images/Sex-for-Men.pdf

http://www.spinabifida-incontinence.info/sex.htm

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8095349/k.F32A/Sexuality.htm