This chapter will cover the sensory system, most specifically touch. How spinal cord injury changes your experience of touch and some suggestions on how to manage these changes.
Sex is never going to feel good again. “I don’t have any sensation so why bother?”
With help and the right tools, you can take an active role.
What Is It?
The body has a sensory system that helps you recognize your environment through our 5 senses: touch, taste, smell, sounds, and sight. Your emotions and feelings can influence your experiences of these senses.
The sensory system is part of a bigger network of the nervous system through which touch messages are passed from the body to the spinal cord and then to the brain. The brain sorts the information and then causes you to react. For example: you touch a hot stove with your finger, the nerves in your skin then sends a message to the spinal cord, which travels up to your brain. The brain says: ouch, that’s hot! And you remove your finger from the stove (all of this happens within milliseconds).
Sensation can also be understood in your brain as pressure, pain, tickle, temperature, textures, etc, and then labeled as positive, negative, neutral, sensual or sexual. Pretty complicated hey?
The average length of your spinal cord is about 19 inches and it contains about 13,500,000 neurons!
What’s Different Now?
Following spinal cord injury there is a change in the communication system between the nerves, the spinal cord, and the brain. For some people this can cause loss of all sensation below the level of injury, partial loss of sensation, or sensations can be misinterpreted all together (i.e. pain).
Different doesn’t have to be bad—it’s just different and takes some time to figure out.
The feeling of sexual touch below your level of injury may not be as intense as it was before. But, sexual arousal can make the areas above your level of injury more sensitive (i.e. ears, lips, nipples, scalp, back of your neck, back of your arms). Also, your other senses can heighten these areas when touched.
Some peers with SCI have even noticed that something as simple as a scalp massage can elicit an orgasm!
What Can I Do About It?
The first step is to start paying attention to what you DO feel. This can be done in a lot of ways—in the shower what does the water feel like on you your skin? What do you feel when you do a catheter? If you have hand function what does it feel like when you touch your body? or someone else’s (with permission of course!)?
It is easy to focus on what you don’t feel but sometimes this can prevent you from looking a bit closer and find something new. Try out the Body Mapping and Sensate Focus exercise sheets included in this chapter in the sidebar.
Also try listen to this Mindfulness Body Scan recording to learn how to be present within your body, to connect with what you can feel and be aware of.
What Do I Need to Know?
- If hand function is limited, a universal cuff can be adapted to help you use something such as a feather to touch yourself.
- Fearful of what you may or may not find out? Remember in the wise words of GI Joe “knowing is half the battle!” Once you have information, you can start looking at ways to enhance what you feel.
- When touching hurts? Wanting to avoid these areas is common but not touching doesn’t make it easier!
- Sometimes the use of increased sensation (i.e. using vibratory devices) can help heighten areas of decreased sensation.
Be your own detective! Take time to explore some of the strategies mentioned earlier and see how they work for you.
Know what precautions you should take to avoid burns, skin break-down, and autonomic dysreflexia (AD) with over stimulation. For example, when using a hot water bottle fill it with warm water instead.
Who Can Help Me?
Your physiotherapist or occupational therapist, can help you discuss and brainstorm options for positioning in bed or using devices. Sexual health clinicians like the Sexual Health Rehabilitation Service and/or your rehab physician can help you problem solve some your biggest obstacles to sexual health, and identify medical complications of SCI that might need attention in order to help you have a safe and healthy sex life.
Physician, nurse practitioner, or other health care professionals may be able to refer by faxing 604-737-6259.
Sign up to become part of the peer network at SCI BC, or other SCI Canada organizations. Talking to someone who knows what you are going through can be a great resource!
Despite changes in sensation, pleasure is still possible. Exploring your “new body” can be scary but you might actually be surprised at how much fun you can have doing it. Be mindful and enjoy the ride!
PleasureAble: Sexual Device Manual for Persons with Disabilities (2010) - Krassioukov et al. This booklet was created by rehabilitation, sexual health clinicians and OT students, and contains pictures, descriptions and information on how to find sexual devices that work for a variety of disabilities. Available online and in hard copy - email the SCI-BC Infoline to request a copy.
Contact the Sexual Health Rehabilitation Service (SHRS) or consult your rehab doctor for information on a sexual health clinician in your area.
Body Mapping (PDF) - Discover what parts of your body feel what, and how!
Mindfulness - An audio recording of how to be present, aware, and in tune with your body.
Partner Senate Focus - Use this exercise as a guide to discover what you and your partner feel.
Self Senate Focus - Print out this focus exercise and record what your body feels.
Adaptive Devices - Sexuality After SCI.
Check out the Video Playlist for this chapter!