Sex and spinal cord injury
After spinal cord injury, sex and relationships may be a worry. You may be concerned about sexual function, or bladder and bowl management while intimate. That’s why we spoke to Michelle Donald, an accredited senior psychosexual therapist with a spinal cord injury herself.
Michelle sustained her spinal cord injury in 1996, when she fell off the back of a motorbike. She has a T12 level complete injury. When she was in hospital, Michelle found she was struggling to get the information she needed about sex and spinal cord injury. She found that most of the information available was geared towards heterosexual men.
Michelle and her partner struggled to reignite their intimate relationship for a while. It took them a long time to figure everything out. She often found herself thinking “if I can’t feel anything, what’s the point?”. This inspired Michelle to train as a psychosexual therapist. Now she helps people in a similar situation rediscover their intimate lives.
“Back in hospital, I found that I just wanted to speak to another woman about what I was going through. Now I help people and couples listen to each other, play, and experiment.”
Michelle supports other people with a spinal cord injury as a psychosexual therapist
Read on for some of Michelle’s top tips for a healthy intimate life with a spinal cord injury.
Please note: Back Up are not medical professionals. This resource consists of advice from an accredited senior psychosexual therapist, using information she has published in the past. If you have any medical questions, please contact your GP, spinal centre, sexual health clinic or any other relevant medical professional.
Sexual function for everyone: Understanding your body, pleasure, and safe sex.
Spinal cord injury can make you feel like every aspect of your life has changed, and sexual function is no exception. However, with the right knowledge, you can have a fulfilling sex life again. Your sexuality and desires are still the same, even if your body has experienced changes.
Info for women
Two of the main effects you might notice after spinal cord injury are loss of sensation and the ability to lubricate. Of course everyone will experience different levels of sensation, depending on your injury level, but here are some general tips surrounding sensation and pleasure after spinal cord injury:
• It can be frustrating to struggle to orgasm after spinal cord injury, especially when men have access to medications like Viagra that have no female counterpart. In the early days, it’s key to take yourself away from the idea of orgasm, and instead try some self-focus. Think about how different sensations feel on your body, write down your feelings, and explore yourself.
• It’s good to bear in mind that most women with a spinal cord injury can orgasm, it just takes more time and different methods. For example, nipple stimulation and the vagus nerve.
• Some women with a lower level injury and Cauda Equina find that internally the G-spot and the Skene’s Gland may be more sensitive after spinal cord injury. Bear in mind that this kind of internal stimulation can produce a lot of liquid. Some women think they have had an accident, but the liquid is not urine – don’t worry about it, it is totally normal.
• It is good to experiment with positioning. This video on sex and paralysis from Dr Mitchell Tepper is a useful resource for women. “Finding the right position for you and your partner is a matter of open-mindedness, creativity, experimentation, adventure, adaptation and maintaining a sense of humour.”
• If you are worried about spasms during sex, be sure to talk about them openly with your partner. Spend some time with them using non-sexual touch to get used to how your body reacts to different sensations.
If your vulva is not able to self-lubricate after spinal cord injury, over-the-counter products can help. Ensure that you only use water-based lubricants with condoms and sex toys as Oil lubricants can break down the properties of these and make them unsafe. Organic lubricants are better. “YES” is an excellent product and is available on the NHS. Watch out for water based lubes with glycogen in them that may cause yeast infections.
Watch these webinars to hear more about lubricants from Michelle
Info for men
Depending on your injury – taking into account your level of injury or whether you have an incomplete injury – your ability to get an erection will differ. Levels T11 – L2 control psychogenic erections, which happen when your brain is stimulated by fantasising. S2 – 4 control reflexogenic erections, which happen through physically touching the penis. Do not worry if you get an erection during your personal care routine such as when washing or during catheterization. It is just a physical reaction, an erection doesn’t mean sexual intent or arousal.
If your injury is below L2, you will be unable to achieve an erection without erectile dysfunction treatment. Fortunately, there are plenty of management options:
• Oral medication like Viagra, Cialis, and Levitra; These tablets taken 30-60 minutes before sexual activity can help you achieve an erection. Possible side effects include headaches, facial flushing, indigestion, muscle cramps, and disturbance of vision. Be sure to consult your GP before taking any medication.
• Another possible option is intracavernosal injections – these are drugs injected into the side of the penis which work within 5-10 minutes. If you decide on this method, you or your partner will be taught the correct injection technique by your doctor. Possible side effects can include prolonged erection, bruising, and tissue scarring.
• If you are seeking a non-invasive method of triggering an erection, talk to a medical professional about vacuum erection devices. This is a cylindrical pump placed over the penis, creating a vacuum which draws blood to the penis.
Some men may struggle to ejaculate after spinal cord injury. If you are unable to ejaculate, speak to your GP or spinal centre about Penile Vibrator Stimulation (PVS). This technique uses vibrator devices like the Ferticare PVS to induce ejaculation. For individuals with a higher level injury, be aware that this technique may cause a risk of autonomic dysreflexia. This could be countered by administering Nifedipine beforehand to control the AD symptoms. Again, ensure you consult a medical professional before attempting PVS.
Watch Michelle talk about PVS in this webinar with Ferticare:
Sexual health and spinal cord injury
Regardless of your level of injury, it is still important to practice safe sex. Use a condom to prevent sexually transmitted disease. As fertility is not affected by spinal cord injury, it’s important to know what contraception options suit you. Be sure to consult your GP to understand what method of contraception is best for you. Some methods may not be appropriate for you, depending on your injury level. For instance, the combined pill – a contraception method which includes a combination of estrogen and progestogen – may increase your risk of deep vein thrombosis (DVT). Diaphragms may be difficult to use if you have limited hand function, and if you have little or no sensation below your injury level you may not know if it has been put in incorrectly.
You can find a NHS sexual health clinic near you here.
Bladder and bowel care
Managing your bladder and bowel care can be a worry after spinal cords injury – but don’t let your concerns prevent you from having a fulfilling intimate life. Did you know that the nerves that go to the bladder and bowels are at the same level as the ones which serve sexual function? With a spinal cord injury, stimulating the sexual function nerves may result in stimulating the neighbouring bladder and bowel nerves accidentally. It’s possible to have an accident if you start getting intimate with a full bladder or bowel, so always perform your bladder and bowel routine before having sex. This routine can be different for everyone, but read on for some general tips:
• Ensure you practice good hygiene around the catheter site. This, combined with keeping hydrated, are steps you can take to prevent UTIs from developing.
• A good diet can make bowel management easier. Increasing fibre in your diet can prevent constipation form a bulkier stool that will pass easier.
• Don’t worry about accidents – they happen! Be open about talking about your concerns with your partner, or get in touch with a Back Up mentor to speak with someone in a similar situation.
If you have an indwelling catheter, it can be left in or removed for sex. For women who choose to leave it in, tape the catheter out of the way – up to the abdomen or hip – making sure that urine can still drain. For men, you can run the catheter along the side of the penis and cover with a condom. Once again, ensure that urine can drain. If you choose to remove the catheter, be sure to put it back afterwards with clean hands. If it’s left out too long, urine can build up and cause autonomic dysreflexia.
Supra pubic catheters can be treated a lot like stomas. Before sex, ensure that you securely tape down anything that may be at risk of being pulled. Before you have a supra pubic catheter put in, be sure to talk to your medical professional about where you want it to be put in. Discuss what options are available and ensure it is put in a location that suits you.
Sex and having a higher level injury: What to be aware of
Communication is key. This is especially true with a higher level injury. Limited mobility may make sex seem intimidating, but talking openly with your partner will ensure a fulfilling sex life. Clearly communicate your needs and desires with them, and don’t be afraid to experiment.
With a higher level injury, try experimenting with types of touch. Our necks are an amazing erogenous area, along with our ears and the backs of our heads. If your injury is incomplete and you have some genital sensation, speak to your Occupational Therapist about adaptions for sexual toys, so they can be used with limited hand function.
Communication is also especially important when you have personal assistants (PAs). Clearly communicate with them when you want to have intimate time with your partner. Set up boundaries for time alone.
Be confident in expressing what sexual support you may need from your care team Broadly speaking, sexual support describes what kind of assistance an individual may request and what the PA can provide. It acknowledges that sex is a part of life, and may be an activity for daily living. This can vary from a PA helping you cook a romantic meal for a date or partner, setting up a room so you can have some intimate time, shopping for sexual materials, or assistance with positioning. It’s key that you discuss these needs with your care provider at the beginning, so you can outline your expectations. Don’t hesitate to get in touch with Back Up if you have questions about managing your PAs.
Watch this webinar with Andy Walker, talking about “The Art of Romance” with a high level spinal cord injury. This webinar was part of Love Abilities, a virtual sexuality and disabilities festival.
Pain and fatigue
It’s reported that over 50% of people with a spinal cord injury experience neuropathic pain. Many individuals have their own ways of managing pain – from keeping a pain diary to practicing mindfulness. You can find more information in this resource.
Fatigue is also something experienced by people with a spinal cord injury that may be a barrier to a fulfilling sex life. It is worth trying different positions to find what is comfortable. You should consider how much energy it will take to hold a particular position and what will allow the most movement. For example some people find lying on their back allows works well, as less energy is used to support your body weight. Your hands are also left free to help with stimulation.
There is nothing wrong with asking your partner to slow down or stop if you’re experiencing discomfort, fatigue, or pain. Healthy sex lives are made up of consent and mutual respect. If you’re experiencing discomfort, make your voice heard and ask your partner to switch position, change pace, or stop.
Michelle’s overall top tips for intimacy and sex after spinal cord injury.
• Play and keep it fun. If areas of your body feel different now, try different sensations. Try something warm or cool, hard or soft touch, or blowing on the skin.
• Don’t be scared to try touching hypersensitive areas of your body. Day to day, these areas can change in sensation – this can be because of medication, time of day, or even diet. What may feel painful one day may feel very different another.
• I often give this advice to clients who have newly returned home and are rediscovering intimacy; prioritise trying new and different sensations over penetration.
• Spend time getting used to your body after spinal cord injury. See how it responds to touch, and allow yourself to be open.
External resources
An interview with Michelle about dating and spinal cord injury
Sex and the Spine: Information about sex and spinal cord injury
Enhance the UK
Andy Walker’s “Art of Romance” with a higher level injury
PVS webinar
NHS sexual health clinics
Positions and spinal cord injury
#MasturbationMonth – Michelle talks positioning and spinal cord injury.
LGBT+ resources and support
ParaPride
Love, sex, and spinal cord injury from Aspire Law
Stonewall – resources for LGBT+ disabled people
Switchboard – LGBT+ helpline
Mindline Trans – support for transgender people
Galop – an LGBT+ anti-violence charity
Meg-John & Justin
Pink Therapy
