Frequently Asked Questions
What is the general anatomy of spinal cord?The spinal cord is a bundle of nerves which carries messages between your brain and limbs and also to/from your internal organs. The spinal cord travels inside a bony tunnel formed by your vertebrae (back bones). The spinal cord has nerves coming off it at every level in your neck/back. The nerves supply muscles and sensation. The vertebrae are divided into regions - cervical (neck), thoracic (upper back/chest), lumbar (lower back), sacral and coccygeal (tail bone). The cervical nerves supply your arms, the thoracic nerves supply your chest, abdomen and back, the lumbar nerves supply your legs, and the sacral nerves supply bladder, bowel, and sexual function.
Most definitely.............yes! It may be different to how it was before but it certainly is possible. In fact some people say that their sexual relationship has improved since their spinal cord injury because it has encouraged them to focus on sexual intimacy rather than just sex.
My partner has a spinal cord injury how can I make sex enjoyable for both of us?
Through experience and exploration, most of us with SCI learn that we can still please a partner. We sometimes also learn that our own ability to receive sexual pleasure is diminished, leading us to accept--by default--the old adage that "It's better to give than to receive." This may be at least partially true for some of us--but the possibility and benefits of receiving sexual pleasure still need to be pursued. Reciprocal sexual pleasure is seldom impossible.
About half of spinal cord injury survivors can experience orgasm and this ability is not strongly related to the level or completeness of injury. Some of us, for that matter, find sex even better than before injury. Which of us will be so fortunate? There is growing evidence that sexual knowledge, sexual self-esteem, and time since injury are related to the ability to experience sexual pleasure and orgasm. It seems that knowledge is power, power fuels self-esteem, and self-esteem opens the door to sexual pleasure.
With this model in mind, where do we start? It's important to learn as much about sexual function and response as possible. Psychologically, how we think and feel affects our level of desire. Physiologically, sexual arousal is associated with faster breathing and heart rate, and increased blood flow, muscle tension and sensation in erogenous zones like the lips, ears, neck and breasts. These are the outward indicators of sexual pleasure.
We can learn to focus on pleasurable feelings, let our breath flow freely and stimulate our bodies in any way that feels good. Groan, moan, suck, bite, pull or do whatever else you feel like doing. Orgasmic sex requires tuning into our sensations--in the moment--and forgetting about quad bellies, atrophy, catheters and making embarrassing sounds. It means not worrying about performing up to some imagined standard. And it means forgetting what we learned in the past about what is and isn't pleasurable.
What's right is what works now. At one time, gentle licking of the ear may be an irritation. At another, it may send us into ecstasy. When we are in tune with our bodies and open to pleasure we may find it in the strangest places.
.... and Receive
Sure, you might be saying, but what about the lost sensation in my penis or clitoris, vulva or vagina? Many of us still enjoy genital stimulation with little or no sensation, and many others choose to leave it out of sex play. In our research at Rutgers, three women with complete spinal cord injuries and no feeling in their genitals nevertheless experienced orgasm with genital stimulation. Others, in a study at Kessler Institute for Rehabilitation, could achieve orgasm with a vibrator. For yet others, stimulation of only non-genital areas works well.
Sexual pleasure and orgasm need not depend on genital function. If we take our time, play and explore, we may discover that sometimes it is better to receive. (Mitch Tepper)
This is where it is probably a good idea to have some good sexual knowledge about arousal and orgasms. In more medical terms orgasm is only one phase of the four phases of the sexual response cycle. (arousal, plateau, orgasm and resolution).
There are two ways that we become physically aroused in the genital area (expressed as erections for men and lubrication for women). This can be through erotic thoughts, fantasies, or visual, auditory or olfactory (smell) stimulation (Psychogenic) or arousal from physical touching (Reflex). All spinal cord injuries are different: different levels of injury and severity - they are unique. However very generally speaking the higher your level of injury (T 12 and above) the more likely it will be that your ability to be aroused by reflex (physical touching) erection would not have changed. The lower your injury (L5 and below) the more likely that it will be that your ability to be aroused by psycogenic stimuli would not have changed. Include in your stimulation above the level of injury - people often develop very erotic new areas.
NB The majority of women are unable to orgasm through penile vaginal intercourse alone. Most women require manual or oral stimulation to orgasm. This is irrespective of whether they have a spinal injury or not.
After a spinal cord injury muscles and sensation below the level of injury can be affected. As the nerves which control sexual function are at the bottom of your spinal cord, it is usually affected in some way.
People with a spinal cord injury may not be able to express their sexuality in the same way as they did prior to their injury. For a woman it may affect her ability to have vaginal lubrication and for a man the ability to have a sustainable erection. There are 2 ways our bodies become sexually aroused (ie. Lubrication or Erection) - through psychogenic or reflex arousal
In general, how you are affected depends on your level and severity of injury. If you have a complete upper motor neuron (usually T12 and above) presentation it is likely you will get:
- Reflex erections or vaginal lubrication possible
- Nil psychogenic arousal
- Ejaculation unlikely
If you have a complete lower motor neuron (usually T12 and below) presentation:
- Absence of reflex erections and vaginal lubrication
- Potentially psychogenic erections and lubrication
- Possibility of ejaculation and orgasm
- Possibly genital sensation intact
If you have an incomplete spinal cord injury there are no definite rules and you will need to experiment to see what is still working and how. If your injury is around T12, you may have a mixed picture (combination of upper motor neuron and lower motor neuron.)
In a research study done by Marca L. Sipski (1995) she found that a large percentage of SCI women achieved orgasm regardless of pattern or degree of neurological injury. No consistent characteristics were identified that would allow prediction of which women with SCI would be able to experience orgasm. However, subjects who achieved orgasms had a higher sex drive and greater sexual knowledge.
These findings are similar for men. Because your body responds differently it may be that you need to re-learn how to have an orgasm and it may need more stimulation and take longer than what it previously did.
Males:
The first treatment option is often oral medication such as Viagra (Sildenafil), Cialis (Tadalafil) or Levitra (Vardenafil). These pills are self-administered and work to increase blood flow to the penis to improve erectile function. Sexual stimulation is required to gain an erection as popping a pill is not enough.
Some men may prefer or respond better to one medication over another and dosages may need to be adjusted.
Other methods of gaining an erection include:
- Penile injection therapy which involves an injection into the side of the penis. Drugs such as Cavajet can be prescribed by the physician.
- Vacuum pumps which aim to draw blood into the erectile tissues
- Vibrators which help to stimulate the prostate gland and can cause an erection.
It is advised that you talk with your doctor about what medications to trial or what other methods may be appropriate.
Females:
There have been trails with Sildenafil (Viagra) but to date there are no medications that are medically recommended for woman. Because some women with spinal cord injury may be able to orgasm and others may have sensation still in the genital region similar techniques can be trialled to those before spinal cord injury. Using a vibrator or hand massage machine can be very effective.
I guess the short answer to this question is what positions, for you and your partner, are comfortable with (both physically and emotionally). A bit of innovation and imagination may be required. A good position would be one that allows you to touch your partner (not necessarily with your hands) and yourself as easily as possible. Adjust and adapt your position to meet your needs. Problem solve together and remember that for most people there is a bit of trial and error - some things work well, others not. Probably most useful of all is to focus on having fun and enjoying being intimate with each other - open to a multiplicity of ways to express your sexuality.
In the sexuality reborn video they show how a couple enjoy intimacy in the shower, the male who has a high level injury (C5) is on a commode and the female is standing (need to watch the video again to get the exact information)..... They mention that they enjoy this position because he loves the feel of water on his face, she can massage his head, his hands are free and I leave the rest to your imagination. Other couples find that sitting on a bed or table works well. In bed pillows can help with supporting your body. Consider the amount of energy it will take to keep the position and what will allow the most movement. Some people find lying on their back allows for more energy for sex since less energy is used to support their weight. It also leaves the hands free to help with stimulation. Of course making love in the wheelchair is also a possibility.
There is also a piece of equipment called "The Intimate Rider", it was designed by a quadriplegic person to help people with limited lower body mobility achieve sexual positions that would normally be difficult. It is a small swing chair and with a small amount of upper body movement sets the Intimate Rider in motion. (Link for a video)
If you have spasms, it is important to either position in order to increase the use of the spasm to help with movement, or, if the spasms are too severe, adjust positioning to stop them from interfering. Try different positions until finding one that is comfortable and works best.
Whatever makes you feel good is important. It may be the same as before your spinal cord injury or it may be now a little different. Experimentation and communication are essential to knowing what works for you now and finding mutual satisfaction. When planning to spend quality time with your partner it is important to prepare yourself, your partner and your surroundings. Some ideas include: dimming lights, burning candles, playing music and intimate touching. Setting the mood will improve the experience and make it more enjoyable. Intimacy can also be felt through hand holding, hugging and kissing in addition to sexual activity.
Sexual experimentation also can help to enhance a couple's physical pleasure. Some couples may find that methods for gaining sexual pleasure are the same as before the injury. Communicating to your partner is essential to find out about what feels good and what does not. Loss of sensation may mean other areas where you can feel now feel good when they are stimulated and you could encourage your partner to touch you in these areas. You may find areas of increased pleasurable sensation such as the nipple line, back of the neck including the ears, shoulders and the band above the level of injury.
Your partner may have a fear of hurting you or causing you pain. Assure them that you are fine and tell them if something is causing you problems.
Yes it is true that sexual activity can cause autonomic dysreflexia.
Autonomic dysreflexia or hyperreflexia is a condition that causes abrupt onset of high blood pressure. Any person with a spinal cord injury of T6 and above is at risk of developing autonomic dysreflexia (A.D.).
A.D. can occur from over stimulation during sexual activity, menstrual cramps or in labour and delivery.
Common symptoms include a pounding headache, goose pimples, sweating above the level of injury, nasal congestion, slow pulse, reddened face and red blotches on the skin above level of spinal cord injury.
If you feel that you are developing autonomic dysreflexia stop sexual activity and sit up. It may help to ensure your bladder and bowel are empty prior to sexual activity commencing. If symptoms do not go away, it is important you seek immediate medical help.
The basics: A regular bowel and bladder routine can minimise the chance of having an accident. Empty your bladder (self catheterising or other means) or empty your urine bag before sexual activity. You could empty your bowel as well but it should not be necessary if you are in a good routine.
Other tips are: limit what you drink before sexual activity (not always possible as it is may be unplanned!) especially coffee, tea, caffeine drinks and alcohol. Maybe don't eat a big meal just before sexual activity.
For some people sexual activity may stimulate the bowel and bladder. It's always good to be 'prepared' for an episode of incontinence just in case it does happen. Have some supplies near by to manage this should it happen ie towels, wipes, incontinence sheet, pad.
It doesn't need to be a complete distraction to you and your partner. Discussing your concerns with your partner prior may reduce your anxiety and enable your partner to be more supportive of your needs. If they don't know, how can they help??
If you are having urinary or bowel incontinence then please discuss with your GP or Spinal Unit team to review your bladder and bowel regime.
Following a spinal cord injury or condition it is important to firstly become comfortable and get to know your own body and how it works again! Know what feels good and what might not and use this to your advantage. It is important to feel good about yourself foremost in order to maintain and attract a partner. Communication is a vital component of all healthy relationships and a key ingredient to enjoying sex and intimacy after a spinal cord injury/condition. A good sense of humour always helps in those awkward and sometimes unexpected moments. J The more comfortable you are the less self-conscious you feel and this will enable your partner to feel the same.
Just remember; beauty is in the eye of the beholder!
If your injury is new and you already are in a relationship remember that the losses for you are very significant, but they also are for your partner.
Because, very often so much has changed for you it is easy to be well attuned to your own needs (and you need to) and quite understandably less mindful of others. In the initial phases of your rehabilitation the focus will mostly be on you but if this becomes the new normality in your relationship chances are your partner will be wanting more out of the relationship. Don't take your partner for granted. Be sensitive to your needs and your partner's needs when you ask for help. Remember it is often the small things that make the world of difference - thank-you, when it is convenient for you, could you please etc etc.
Put effort into preserving the things that you and your partner enjoyed doing as a couple before your injury. Try as much as possible, to get back into those things.
Don't allow your relationship to be consumed with your injury and what is happening to you. Put another way, don't let spinal injury take over your life, it is a part of your life but it does not have to be your whole life.
The way you express intimacy in your relationship will often be a good gauge of generally how your relationship is. Couples will often blame sexuality for a relationship break-up however these problems are more likely an indicator of other problems in the relationship.
Get outside help like counselling for example - a good relationship is too important to lose.
For many couples negotiating the delicate boundaries between being both your partner's caregiver and lover is pretty tricky. You may have no other option for this but if you do have an option, think it through carefully before you opt for being your partner's caregiver / asking your partner to be your caregiver, especially for your personal cares.
Women - It is normal for most women to experience a brief pause in their menstrual cycle after a SCI. This pause may last for as much as 6 months after injury before the menstrual cycle resumes. The ability of women to have children is not usually affected once their period resumes. If your period does not resume, talk to a doctor about possible options for treatment.
Men - There are two main factors affecting a man's fertility. The first is due to an inability to ejaculate as a result of damage to the spinal cord. In fact, 90% of men with SCI are not able to ejaculate during intercourse. The second reason is the motility (movement) of the sperm as it is considerably lower following SCI. Motility is necessary for the sperm to travel through the cervix and to penetrate and fertilize the egg.
However, options are available to assist men with SCI improve their ability to father children. Men who are interested in fathering a child should get medical advice and treatment options form a fertility specialist experienced in issues of SCI.