Sex – a guide for people with spina bifida

Sex is not compulsory. Whenever you decide to have sex with someone it should be your choice and most people would see sex as the natural progression of a loving relationship. 

Remember that if you are at a party and have had a few drinks your judgement could be affected and you could end up having sex with someone and regretting it later.

If you have not made a considered decision to have sex you could be unprepared and risk pregnancy or a sexually transmitted disease. Make sure you always use effective contraception.

What kind of contraception should I use?

There are many methods of contraception available, some safer than others.

Using a condom with or without a spermicidal barrier cream is a way of protecting yourself against a sexually transmitted disease and is an effective method of contraception.

If you, or your partner, have spina bifida you should ideally be using latex free condoms, e.g. “Avanti” which are made by Durex and available from most chemists or Family Planning Clinics.

Remember – you can get pregnant the first time.

Sexually transmitted infections (STIs)

STIs are passed on through bodily fluids, like saliva, blood and sexual fluids (e.g. sperm). You catch an STI by having sex or oral sex with someone who’s infected.

The best way to avoid STIs is by using a condom when having sex and this includes oral sex.

If you think you have acquired an STI you should seek medical advice immediately.

Examples of STIs include: chlamydia, genital herpes, AIDS, HIV, pubic lice, syphilis and gonorrhoea (sometimes referred to as the “clap”).

Some STIs show no symptoms at all, but common symptoms of STIs can include:

  • pain or burning when you pass urine
  • itches, rashes, lumps or blisters around the genitals or anus
  • pain and/or bleeding during intercourse
  • bleeding after sex and/or between periods

Diagnosed early enough, most STIs can be completely cured, usually by a short course of antibiotics. But if you ignore an STI there is a risk that you can cause permanent damage to your health and fertility.

So if you think you may have an STI, speak to your GP right away. If you would prefer to talk with someone else, you could go to an NHS drop in centre, or your nearest Family Planning Clinic, or call the National Sexual Health Helpline provided by Public Health England on 0300 123 7123 (Monday - Friday, 9am to 8pm).

Sex and continence

To prevent any “accidents” during intercourse make sure your bladder and bowel are empty beforehand. If you use clean intermittent catheterisation, do so prior to intercourse – this can sometimes interfere with the spontaneity of the moment but does reduce the risk of any embarrassing situations!

If you have an indwelling catheter, you can still have penetrative sex.

If you are male you should be wearing a condom anyway, and so the condom will go over the catheter. Make sure you empty your bag first and use a spigot or bung in the end of the catheter tube where the bag is usually attached.

If you are female, again empty the bag and place a spigot or bung where the bag usually goes. Then tape the catheter to the inside part of your thigh – this will keep it out of the way. If you are able to catheterise yourself you can just remove the catheter and then replace it with a new one when you have finished.

Remember folic acid!

It is recommended that all women of child bearing age take a daily supplement of folic acid to reduce the risk of having a baby with a neural tube defect (NTD) such as spina bifida. If you or your partner have spina bifida your chances of having a baby with a NTD are increased. To reduce this risk, it is recommended that women in this higher risk group take a daily 5mg supplement of folic acid for at least one month prior to conception, and until the 12th week of pregnancy. This is a higher dose than that which is recommended to the general population and is only available on prescription.

Many pregnancies are unplanned and accidental pregnancies do occur, so if you have started having sex speak to your GP about folic acid.

Shine Health Advisory Service

Providing telephone and online support to anyone living with (or supporting someone with) spina bifida and hydrocephalus or related conditions.

The service operates between 9am-5pm, Monday to Friday. Closed on public/bank holidays.

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