People with spina bifida have the same range of sex drives and desires as anyone else. The way you express your sexuality and get your needs met may sometimes be a little different, but great sex can be creative after all!
Great sex is also:
This article also includes information on the following topics:
Consent is absolutely essential to sex. It involves more than just agreeing to or “going along” with sexual activities, consent is:
CLEAR, ENTHUSIASTIC, ONGOING AGREEMENT TO SEXUAL ACTIVITY
Verbal consent is very important, it is considerate and can be very sexy. For great, consensual sex: ask if your partner wants to have sex & check that they want to keep having sex!
Here are some phrases/questions that you might find helpful:
Remember: the absence of “no” does not mean “yes.” This is also true for “maybe,” silence, or not physically responding.
TOP TIPS:
To protect against sexually transmitted infections (STIs) and/or unplanned pregnancy it is important to use contraception. Remember: many STIs do not have obvious symptoms and if you have reduced sensation you may not be able to recognise an infection as quickly. Stay safe, use contraception.
There are many methods of contraception available and almost all should be suitable for those with spina bifida and their partners. Different contraceptives offer different levels and types of protection against pregnancy and only barrier methods (condoms/femidoms) offer protection against STIs.
For women: Hormonal contraception containing oestrogen can increase the risk of blood clots, particularly in women with limited mobility. Progesterone-based contraception can worsen osteoporosis (something you are at an increased risk of if you have spina bifida). If you have osteoporosis/low bone mineral density, then think about a different method.
For all: Using a condom with or without a spermicidal barrier cream is an effective way of protecting yourself against pregnancy and STIs.
If you, or your partner, have spina bifida you should use latex free condoms to prevent allergy. These condoms are available from most chemists and Family Planning Clinics, online and from some supermarkets. Suitable products include the “Real Feel” and “Latex Free” condoms by Durex and the SKYN range by Mates which has various options in size, texture and lubrication.
Take advice from your GP or Family Planning Clinic to make sure you find the most suitable contraceptive for you.
Be mindful of your skin during any sexual activity that involve lots of friction or where you are staying in one position for a while. Be particularly careful of areas where there is reduced sensation or where the skin is already irritated and/or broken e.g. pressure sores. To reduce the risk of skin damage use plenty of lubrication and change/adjust position during longer sessions. Wearing or having sex on soft, silky fabrics can also help to protect the skin.
Be careful with areas on the body where there is reduced feeling. Some useful tips are:
Sex includes many more activities than just penetration of the vagina by a penis. As with everyone else, you do not have to limit your definition or experience of sex. We can all have sex in a variety of ways: by ourselves; with others of the same or opposite sex/gender; we can do it orally, vaginally, anally, by hand, with or without props; with or without orgasm. Sex includes a huge range of activities and where there’s a will there’s often a way so don’t be afraid to experiment and find what works for you.
The key to enjoyable sex for you and a partner is open and honest communication. This includes letting each other know what feels good (or not so good) and explicitly asking for what you want. Communication can be through words but can also be sounds, gestures or movements. If you or your partner have difficulties hearing or describing, then simply showing what you’d like is a good way of communicating. Other effective methods are guiding your partner with your own hands/fingers or using basic signals like pointing, gentle taps or squeezes.
The best sex positions for you and a partner are the ones where you can both see, touch and do what you want, that feel great and that are safe and comfortable.
There are no fixed rules for positions, so much will depend on the range of movement, strength and energy levels of you and your partner, as well as your relative sizes and preferences.
Here are some positions you might want to try for starters, adapted from “The Ultimate Guide to Sex and Disability” by Kaufman, Silverberg, & Odette (2007):
Try positions where you or your partner are on top with the other lying or sitting on the bed or other flat surface. The partner on top can face forwards or away and can lean forwards or backwards according to comfort and desire. In all variations of the ‘on top’ position, both partners can engage in sexual stimulation (thrusting, stroking etc.). Placing pillows under the lower back and/or knees of the ‘bottom’ partner can help with support. Using a pillow under the knees can be particularly helpful for preventing/reducing spasms & lower back pain and improving genital access.
‘Spooning’ is where both partners are lying on their sides, one in front of the other, both facing the same way. This position is particularly good for those who use catheters with leg bags or who have hip problems. Placing a pillow or blanket between the legs can reduce hip and knee discomfort and makes penetration/stimulation from behind easier. To improve genital access further, the front partner can bend their upper body down/forward, so they’re at 90° to the back partner.
Face-to-face sideways positions can help both partners to thrust or rub against each other. Again, pillows can be used between the legs to make movement easier and the position more comfortable.
One partner can sit on the other’s lap. You can be facing either towards each other, both facing forward, or the ‘top’ partner facing the side. The seated partner can also be penetrated or receive oral sex by shifting to the edge of the chair with the other partner in front of them. All these variations make stimulation and penetration relatively easy for both partners.
Removable armrests and side supports can make it more comfortable to have sex in a wheelchair. In wheelchairs without removable arms, sex is easiest with the top partner facing away, using the armrests for support. Alternatively having sex in a static chair without armrests (or that is wider) may be more comfortable.
Orgasm is not essential for sex but it’s often a desirable part of it. Individuals with spina bifida will sometimes have difficulties in reaching orgasm due to nerve damage and sensation loss. A good way to explore your own orgasms is through masturbation: stimulating yourself in different ways to find what feels best. Try not to worry about whether you can or will orgasm as the pressure/anxiety can stop it from happening. Relax and enjoy the sensations that you can experience. Not everyone is able to orgasm, many aren’t able to every time: it’s perfectly possible to have satisfying sex life with no orgasms and just plenty of pleasure!
Ejaculation is distinct from orgasm, though the two are intimately linked. Men with spina bifida may be able to achieve orgasm without being able to ejaculate (see later section on male fertility for more information).
Like orgasm, penetration is not required for sex, though understandably it is of interest to some.
Men with spina bifida may or may not be able to achieve and maintain a full erection, depending on the level of nerve damage. To what extent a man has difficulties largely depends on how high their spinal lesion is. Erections can also be affected by medications such as anticholinergics (for urinary incontinence) and antidepressants.
Erectile dysfunction can be treated in men with spina bifida with various methods, speak to your GP about your options:
Artery narrowing (atherosclerosis) can also cause erectile dysfunction. In this instance lifestyle changes are often the best treatment e.g. losing weight through diet and exercise, lowering your blood cholesterol and reducing blood pressure. These changes will also improve your general health and may increase your sexual stamina.
Women with spina bifida can be penetrated in the same way as those without the condition. Vaginal sensation and/or the strength of your pelvic floor muscles might be reduced due to nerve damage but penetration should be possible if desired. Go slowly at first and use plenty of lubricant.
There is an entire industry dedicated to creating products to sexually stimulate our bodies and minds. Brilliantly this means that lots of specialist products are available that can help enhance the sex lives of those with different bodies and abilities. You don’t have to buy special props and accessories though: pillows make great positioning aids; a showerhead can be very stimulating; mirrors can help with positioning and can provide an erotic view; scarves & belts can double nicely as slings for limb support. With a bit of imagination you can find useful sexual aids most anywhere!
If you do want to buy something special, there are all sorts of products available online so browse some websites and to see what appeals and/or could assist you. Spokz is one website that sells sex aids and toys specifically for disabled people www.spokz.co.uk but non-specialist sites such as https://www.lovehoney.co.uk/ may also have suitable products.
A couple of ideas that you might want to consider are:
TIP: Watch out for latex. Look for toys made from silicone, they are sometimes a bit more expensive, but they reduce the risk of allergy and can be cleaned with hot soapy water (or even in the dishwasher!). Toys made from silicone retain heat well so they will warm up to your body temperature quickly as you use them, and they are perfectly suited to temperature play.
To reduce the risk of leaking during intercourse empty your bladder and bowel before you begin and limit your intake of things that make you wee, such as caffeine and alcohol. If you use clean intermittent catheterisation, do so before sex – this may interfere with the spontaneity of the moment but does reduce the risk of leaking. Sex that’s planned and prepared for can be just as exciting as spontaneous sex and anticipation is a turn-on for a lot of people.
Leakage might happen but don’t worry - sex is actually a fairly messy business anyway. Be prepared: keep a supply of wet wipes and some towels handy and remember communication and a sense of humour go a long way. You could consider a waterproof mattress protector, there are some quieter ones available that don’t make crinkling sounds when you move around.
You may worry about losing control of your bladder or bowel during sex but the best thing you can do to reduce your anxiety is to talk frankly to your partner. And remember, we all have bodily functions, there’s nothing you need feel squeamish or shy about.
If you have an indwelling catheter, you can still have penetrative sex.
If you are male and using a condom it can go over the catheter. Make sure you empty your bag first and use a spigot or bung in the end of the 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 or strap the catheter to the inside of your thigh – this will keep it out of the way. If you can catheterise yourself, just remove the catheter and replace it with a new one when you have finished.
For women: Pay careful attention to your hygiene when you’re on your period and after sex to reduce the risk of urinary tract infections.
Female fertility is not generally affected by spina bifida but there are some important considerations for pregnancy:
See our information on Pregnancy for Women with spina bifida. It might take longer to get ‘pregnancy-ready’ than for women without spina bifida, depending on your health. Avoid pregnancy until you’re sure it’s right and safe for you.
Taking folic acid before conception can lower your chances of your baby having spina bifida or anencephaly. We understand that this is a personal choice and that some couples will find it unnecessary or distasteful to do this.
For couples that do wish to try to reduce the chance of neural tube conditions, it is recommended that all sexually active women take a daily supplement of folic acid. If you or your partner have spina bifida your chances of having a baby with spina bifida or anencephaly are increased. To lower this chance, it is recommended that women with spina bifida take a daily 5 mg supplement of folic acid for at least 8 weeks prior to conception, and until the 12th week of pregnancy. This is only available on prescription.
Many pregnancies are unplanned and accidental pregnancies do occur, so if you have started having sex talk to your GP about reliable contraceptives and folic acid.
Male fertility can be affected by spina bifida. The erectile problems described earlier can impact on fertility and men with spina bifida may also have issues with ejaculation as this is controlled by the spinal cord: