Sex and spina bifida

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: consensual, safe, and pleasurable.

Consensual sex

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.

The key to consent is communication. Body language and other non-verbal cues are often hard to read and can easily be misused/misunderstood so verbal consent is the best way to be sure.

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:

“May I kiss you?”
“May I touch you?”
“How do you like to be touched?”
“Show me what feels good”
“Is this right?”
“Let me know if you’re uncomfortable or want to stop”
“We can stop or take a break any time”
“Would you like to have sex now/later?”
“Would you prefer to wait?”
“How far do you want to go?”
“What would you like to do?”
“What can I do that would feel good for you?”
“Would you like me to do something different?”
“Should I get a condom?”
“Do you want to carry on?”
“Are you ok?”
“Are you comfortable?”
“Does this feel good?”
“Are we going to have sex?”

Remember: the absence of “no” does not mean “yes.” This is also true for “maybe,” silence, or not physically responding.

Top tips

Keep communicating
Don’t assume, always ask
If you’re not sure, stop & check!

Safe sex

Contraception

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.

Protecting your skin

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.

Taking care with sensation loss

Be careful with areas on the body where there is reduced feeling. Some useful tips are:

Use Lubrication. Lubricants are useful sex aids for anyone having sex. They may help women with spina bifida who, as a result of nerve damage, may produce less natural lubricant (vaginal fluid). Lubricants often enhance the pleasure for those with some sensation and will protect against accidental damage in those with little or none. Use a ‘sex’ lube though, some oil-based lubricants can damage condoms.
Go slowly & gently with penetration. With other forms of stimulation, start lighter at first before gradually increasing pressure.
Sexual aids that constrict the genitals, e.g. rings, should be used cautiously and the penis should not be constricted for more than 30 minutes at a time.
Take care with temperature play. Heating or chilling sex toys can heighten the pleasure of using them. However, if you plan to use them somewhere with reduced sensation first test the temperature of the toy on a more sensitive area such as your wrist or neck. This will make sure you don’t cause injury using a toy that’s too hot or too cold.
The area above where you lose sensation can sometimes feel particularly sensitive and may be especially pleasurable for you or your partner to stimulate in different ways touch, temperature etc.

Pleasurable sex

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.

Communication

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.

Positions

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):

On top

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.

Lying sideways

‘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.

In a chair/ wheelchair

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

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).

Penetration

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:

Oral medications, such as sildenafil (Viagra), have been used successfully by men with spina bifida to have erections. Check with your GP that medicines are OK to use with any other medicines or health issues you have.
Vacuum erection assistance devices (VED) are simple, effective ways to get an erection with a low risk of side-effects. A VED is a plastic cylinder that you place your penis in, and the air is removed with an electric pump. This creates a vacuum in the cylinder that makes the penis fill with blood and become erect. You can then slide a constricting ring around the base of your penis to prevent the blood from draining, helping you to keep the erection. It is important that you do not keep the penis constricted for more than 30 minutes, (set a timer on your phone if this helps). As a man with spina bifida you will be eligible to get an NHS prescription for a VED (otherwise they cost £120-£350).
Penile implants may be an option for some. This treatment involves surgical insertion of an implant into the penis to increase its hardness. The implant may be bendy rods (for a permanent, semi-rigid erection) or a hydraulic prosthesis (that can be controllably inflated/deflated to alter the rigidity of the penis).
Surgery to help build/improve nerve connections has shown promise in increasing the time an erection can last for, but this is an invasive approach and not usually the first option explored.

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.

Props, toys and accessories

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:

Sex furniture: you can buy special furniture that makes it easier to have sex more comfortably in different positions and that is easy to clean. Liberator is one company that makes soft “sexual position enhancers” such as wedge-shaped cushions but there are several others. Standard and specially adapted sex swings are worth considering if either partner has spina bifida as these can help with weight bearing, positioning and motion.
Vibrators: vibration can feel good for men and women alike. If you have difficulties with fiddly buttons look out for products with large controls or twist bottoms. If you have difficulties holding things for extended periods look for products with hand-straps or wider grips. You can even get wall/furniture brackets and hand, thigh or waist straps that will hold a vibrator in one place, keeping your hands free.

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.