Spinal Cord Injury Information

I sincerely hope the information presented will be useful and help you and yours cope with this devastating injury.

If you do not find a subject shown here, please let me know and I will certainly try to research the information and present it on this website in continuing updates.

SCI INFORMATION, Changes

This important section is devoted to the changes that take place in the SCI body, and includes important information on the circulatory system, the respiratory system, the psychology and psychosocial adjustment of the SCI, even sexuality, sex after SCI.

Sex and Sexuality after SCI

  Sexuality is much more than what happens between two people in bed. When we talk of sexuality, we are talking about how people express themselves, of their maleness or femaleness. People’s sexuality is shown in the way they present themselves, in the way they carry themselves, in their body image, and in their grooming habits.

  Sex, on the other hand, is the physical interaction of two people. It may or may not be a very intimate experience. It may or may not be with someone of the opposite sex. It does, however, express sexuality.

  For many spinal cord injured people, whether male or female, the change in or loss of feeling is one of the biggest impacts. Instead of orgasms being just physical and focused on the genitals, they can be more a state of mind. Many spinal cord injured people say that sex is much more intimate and spiritual than it was prior to their injury. These people have found much pleasure in discovering their own and their partner’s bodies in new ways. They do so from touching, caressing, and exploring each other.

  This intimacy and pleasure requires open and willing communication. This means talking about what feels good, about how and where to touch, or about being nervous or excited. Talking about things like bladder and bowel function and about how it relates to sex helps a partner to know what to expect.

  This section discusses sexual function, both before and after injury. It will also deal with some myths and attitudes about sex and sexuality, practical things to think about when having sex, and a list of where to look for further information.

  Not so long ago, ignorance was a widespread problem in the world. Today, although it is still a major disability for many people, one thing has been learned. Spinal cord injury does not automatically banish a person to "The World That Forgot About Sex." In fact, with a little badgering, society as a whole now can accept that sex, marriage, and being a parent can be part of anyone’s life. This means with or without a disability! It is your own choice.

  People with SCI like yourself, along with research, have shown two things: You can lead a sexually active life, and you can maintain intimate relationships if you choose to do so. To do this, though, it will be helpful for you to read up on the topics listed below.

• Societal "myths and misconceptions" about sexuality and disability.

• How your injury affects your sexual functioning. Personal adjustments you can make to deal with these changes.

• People and places in your community and in your rehab facility that you can turn to if you have more questions.

  This following presents some false notions about sexuality and disability. We will attempt to clear up these untruths and replace them with facts and some basic guidelines.

• Myth — It is not fitting for hospital staff to discuss sex with patients.

• FACT — Sex is a natural part of life. It deserves equal attention in your rehabilitation program.

• Myth —People with disabilities are no longer sexual beings.

• FACT — We are all sexual beings. This does not change after spinal cord injury.

  After you are discharged from the hospital, you may find that people on the "outside" don’t approach you in the same way they did before you were injured. You may also find that new people you meet seem a little uncomfortable or anxious around you. They may not know what to say or how to relate to you. You may not be seen as a sexual person or a potential sex partner. For a time just after your injury, you may react to yourself in that same way. This is because many people simply do not see that people with disabilities are still sexual beings.

  If you already have a sex partner, you may notice that he or she does not approach you sexually in the same way as before. Likewise, you may be somewhat timid about initiating sex with your partner. If you are, it may come from fear and anxiety about being able to perform sexually with a "new" body. You may not know how to begin or what to expect. That can be very scary. Spinal cord injury sex education is a place to start working out those fears. This, along with good social and communication skills, can help fix this situation.

  The onset of paralysis will likely affect your genital function. This does not erase your ability and desire to sexually please and be pleased. You will get to know your body much better than you did before you were injured.

• Myth — Marriage and parenting are no longer options for the people with SCI.

• FACT— People with spinal cord injuries do meet people and fall in love. Marriage often follows.

  Women with spinal cord injuries by and large have no trouble getting pregnant. On the other hand, for men, reproductive functions are more complex. They may be impaired by spinal cord injury. Keep in mind, though, that there are other means of reproduction. If you wish, you can discuss them with your doctor or health care provider.

  Men and women who are spinal cord injured do have success in rearing children and keeping happy households. In the long run, the effect of spinal cord injury on your sexuality has a lot to do with how you feel about yourself (self-esteem). Your skill and confidence in close relationships make up part of your ability to function sexually. You must accept yourself as a sexual being and use your learned skills. In doing so, you can obtain sexual satisfaction for yourself and your partner. Here are some simple guidelines that might be helpful.

• The presence of spinal cord injury does not mean the absence of desire.

• Inability to move does not mean inability to please or be pleased.

• Absence of sensation does not mean absence of feelings.

• Loss of genital function and / or sensation does not mean loss of sexuality.

  The physical part of your sexuality may now be different for you because of the nerve damage to your spinal cord. In this following, you will learn about the physical changes that may have occurred since your spinal cord injury.

The Male Sex Organs

  Scrotum - A sack-like piece of skin to house and protect the testes.

  Testes - These egg-shaped organs produce and secrete the male sex hormone testosterone. They also produce sperm.

  Epididymis - A storage place for sperm.

  Vas Deferens - One of the narrow tubes through which sperm travels to exit the body.

  Seminal Vesicles - These two small glands add fluid to the sperm.

  Prostate Gland - A small gland shaped like a walnut that adds more fluid to the sperm. This gland is found just below the bladder. The urethra passes through it.

  Ejaculatory Duct - Close to the time of ejaculation, semen (both the fluid and the sperm) moves through this small passageway. From there it goes into the urethra.

  Cowper’s Gland - After a man becomes sexually excited, these two pea-sized glands secrete a small drop of fluid. This fluid allows the sperm safe and easy passage through the urethra.

  Urethra - During ejaculation, this tube acts as a passageway for the sperm to exit the body. It also carries urine out of the body.

  Penis - This houses the urethra through which sperm passes. Erection assists in depositing of sperm effectively.

The Female Sex Organs

  Labia Majora ("Large lips") - These are the larger of the skin folds that surround and protect the vaginal area.

  Labia Minora ("Small lips") - These are the smaller skin folds found inside of the larger ones. These lie directly beside the vaginal opening. They can vary in color and size from woman to woman.

  Clitoris - This projection of skin can vary in size. It is located just above the urinary opening and just below where the tops of the labia minora meet. It is made of the same type of tissues as the penis. Unlike the penis, though, the only purpose of this organ is for pleasure.

  Vagina - This is a hollow opening into the body. It is about three to five inches long but lengthens and widens with sexual activity. The vagina accepts the penis during sex. It also acts as a passageway in childbirth.

  Uterus - This is a thick hollow muscle located in the lower abdomen. Its sole purpose is to carry and nurture a child. The cervix is the opening into the uterus from the vagina. Through it, sperm enters to fertilize the egg and the baby exits to be born.

  Ovary - The ovaries are two small organs that take turns every other month to produce eggs. They also produce and secrete the female sex hormones. These hormones are estrogen and progesterone.

  Fallopian Tubes - These are two tubes that are attached to the top of the uterus. On the outer ends of the tubes are finger-like pieces of tissue. These "fingers" catch the eggs from the ovaries and pass them down the tube to the uterus. For the most part, it is within these tubes that eggs are fertilized by sperm.

  The changes after SCI are by and large in erection, ejaculation, and lubrication. The lack of, or decrease in, feeling and movement may also change the sexual experience for you.

  There are two types of erections that for the most part occur at just about the same time. Since each is produced through different parts of the spinal cord, we need to speak about them separately.

  Psychogenic Erections - These erections occur by thinking (fantasy, seeing a good looking person, or reading sexually explicit material) and then becoming sexually excited. If your SCI is in the lower lumbar or sacral area and is incomplete, you may be able to have a psychogenic erection. If you have an incomplete injury above the T12 level, psychogenic erections may still sometimes occur.

  Reflexogenic Erections - These erections occur through a reflex mechanism in the sacral part of your spinal cord. Your brain plays no part in getting this type of erection. All you need is an intact functioning reflex system at Sacral two, three, or four segments of the spinal cord. This is present in Upper Motor Neuron (UMN) spinal cord injuries. Any type of stimulation to the scrotum, penis, or anus may cause this type of an erection. Perhaps you’ve noticed this when you wash or apply your condom catheter.

  If you have difficulty getting erections or the erections you get are less complete or long-lasting than you wish, check with your doctor or health care provider.

The Male Ejaculation

  In order for ejaculation to occur, there must be a fine-tuned coordination of all the different parts of the nervous system. Think about a defensive play in football. When one team member doesn’t do what he’s supposed to do, the play may not come out as planned. The same thing happens in spinal cord injury. Some nerves cannot do what they used to do. Therefore, ejaculation may not happen.

  Part of the process that allows normal ejaculation is closure of the bladder neck so that semen can flow past the bladder and out of the urethra. In many spinal cord injured men, retrograde ejaculation occurs. This happens when the bladder neck stays open and semen travels the easy, shorter pathway into the bladder rather than the long distance out of the urethra.

  If you have an incomplete injury, you’re more likely to ejaculate than those men with complete injuries. But, some spinal cord injured men defy all knowledge of science and ejaculate a good deal of the time. The best way to check out your ejaculatory status is to try it out. Don’t be too impatient. Give yourself a few chances to see if this system still works.

  If you can ejaculate or have any mucus-like fluid from your penis during sexual activity, you will need to use birth control if you do not want your partner to get pregnant.

  If you want specific details on ejaculation and fertility (the ability to father children), ask a member of the rehabilitation team or your health care provider. They’ll get you the answers or refer you to someone who will.

  It may take spinal cord injured women up to a few months for them to have a period (menstruate) again. Once it returns, you can get pregnant. If you don’t want to get pregnant, you’ll need to practice birth control.

  In women, lubrication of the vagina works the same way as erections do in men. An injury to the sacral part of the spinal cord may result in lack of lubrication. An injury above this level may leave reflex lubrication intact. With an upper motor neuron (UMN) injury, stimulation to the genitals and vagina will most likely cause this reflex. You may also have psychogenic lubrication if you were injured around or below the T12 or L2 level of your spinal cord.

  Sexually transmitted diseases (STDs) can affect individuals with SCI as easily as anyone else. In particular, any activities that involve the exchange of blood or semen may place you at risk of contracting the AIDS virus. Use of a condom may decrease the risk. You can contact your nurse-practitioner or doctor or your local AIDS hotline or center or Department of Health, for more information.

  There are a number of other STDs that can be contracted by sexually active individuals. If you notice any abnormal discharge or any abnormalities of the skin on your genitalia, consult your nurse-practitioner or doctor immediately.

  If you have some or no feeling below the level of your injury, you may wonder what sex will be like now. It’s true that feeling is ONE (but only ONE) part of the sexual experience.

  The thing to remember, though, is that this doesn’t only come from your sex organs. You still can feel full sexual sensations above the level of your injury. This includes your ears, neck, face, and mouth. Use them and also your other senses to heighten these feelings with the help of the largest sex organ of all — your brain.

• Watch what your partner is doing.

• Listen for sweet nothings.

• Smell that favorite scent.

  If you have some feeling below your level of injury, explore your body or have someone do it for you. Find out where it feels good. Talk with your partner about what you are feeling.

  Partial or complete paralysis below your level of injury may change your ability for certain sexual movement. For some, it may mean changing a few positions in your usual activity. The important aspect to note here is that the loss of movement does not mean you can’t enjoy sex.

  Your needs and desires for sex and intimacy will not change after your spinal cord injury. However, sexual activity now requires some planning. The issue of spontaneous sex may change somewhat as well.

  Many people like spontaneity and the freedom to explore themselves and their partner. This can happen if the time is taken to explore your new self, both in body and mind. Your social worker, psychologist, or other rehab team members may have many suggestions about this. All of them are all here to support you in coping with feelings that can come with sexuality and new sexual experience. All you have to do is just let them know if you feel like talking about this.

Things to Think About Before Sexual Activity

• If bladder control is a problem or concern and you have planned in advance a certain time for sex, decrease your fluid intake three to four hours before sex. Emptying your bladder just before sex may also help.

• To avoid accidents with your bowels, plan ahead for your bowel program. You may want to do it in the morning or just before intercourse so that it will not be a problem.

• Making a bath or shower part of foreplay can certainly be fun. It can help take care of unpleasant body odors as well.

• Because of wheelchairs and concerns with accessibility, you may want to plan where you will have sex. Is your partner’s home accessible? Is a hotel more accessible? And so on.

• If you need to transfer, position, undress, or handle hygiene, will you need help? Some people have attendants do this. Others have partners do it. These activities can always be made part of foreplay.

• If both you and your partner are disabled, will you need someone to assist you? Some couples may ask an attendant to position them for certain kinds of sexual activities.

• Sexual loving is always better in a setting that is comfortable for both of you. Don’t let the preparation destroy the moment.

  Doctors by and large do not advise using Vaseline or any other oil-based substance. This is because it does not dissolve in water and can build up. It is therefore a potential source for infection. Water soluble lubricant jelly is often used.

  It is important to know what kind of erection you can obtain (see above). You can find ways to achieve these erections, and you can teach your partner as well. Prior to sex some people like to discuss with their partner the type of erection they can obtain.

  If you have a reflexogenic type of erection, it is important to remove the sexual stimulation after you and your partner are finished. If not, the penis can remain erect indefinitely and can cause some medical problems. Be sure to communicate with your partner so you know what each of you is feeling and thinking.

  If having a partial or full erection is not easy and you feel it is a major part of your sexual activity, you do have some options. Depending on your case, "penile implants" or an injectable medication that can cause a temporary erection may be an option. An external "penile prosthesis" can also be used. Feel free to discuss these with your physician or other rehab team member.

  Women who have a disabled male partner, may want to use Kegel exercises. These train women to use pelvic or vaginal muscles to maintain a man’s erection or keep a flaccid penis in the vagina. These are listed below.

KEGEL EXERCISES

• 1) Locate the muscles around the vagina. You can do this by stopping the flow of urine. The muscles that control this flow are the same muscles you flex during Kegel exercises.

• 2) Insert a finger into the opening of the vagina and contract these muscles. Feel them squeeze your finger.

• 3) Flex the same muscles for three seconds. Relax. Repeat.

• 4) Flex and release as quickly as possible; 10 to 25 times. Repeat.

• 5) Imagine trying to suck something into your vagina. Hold for three seconds.

• 6) Push out as during a bowel movement, only with the vagina. Hold for three seconds.

• 7) Repeat exercises 3, 5, and 6 ten times each and exercise four once. This series should be done three times a day.

  Catheters and other urinary appliances can or may be removed prior to sex. It is your choice. If you do not wish to remove them, there are a few things you may want to consider. For one thing, you can use longer connective tubing with a larger volume "night" bag. This will allow for a bigger area of movement. Check once in a while to make sure the tubing is not pinched or kinked.

  Some people prefer to remove their catheters before sex and replace them after sex. With an indwelling (foley) catheter, taking it out may depend on your (or your partner’s, or your attendant’s) ability to remove and replace it without causing bladder infections.

  For men, if taking out a foley is not desired, you can fold the tubing over the end of the penis onto the shaft after the penis is erect. The penis and catheter tubing can be inserted into your partner. Some people like to use a prophylactic-type condom. The condom is placed over both the erect penis and the folded-over tubing. If this is done, extra lubrication may be needed around the tubing coming into contact with the penis. This will prevent chafing of the skin.

  If you wear an external (condom) collecting device, you may wish to remove it. People will often use the bladder voiding methods and wash their penis after taking off the condom.

  Women not wishing to remove their foley catheter will often tape the tubing to their stomachs or upper thigh area. If you plan to do this, be sure to use a stretchy type of tape.

  If you have an ostomy, extra tape may be needed to help prevent the chance of leakage. Avoid direct pressure against the ostomy bag, if you can. This also helps prevent leakage. Colored or decorated ostomy bags are on the market now for those of you who wish to use them.

  If you have a suprapubic catheter, people often tape the tubing out of the way. If you do, be sure to use a tape that will not pull on your skin. Leakage and accidents are not the end of the world. They can happen even with all precautions. Even persons without spinal cord injuries sometimes have problems with incontinence. You may want to place a waterproof pad over your mattress. It may also be helpful to keep towels around the bedside in case of accidents.

  Some people will use spasticity to help heighten sexual pleasure. In some cases, spasticity can be used to obtain an erection. Some people may use spasticity during sex. Extension of their legs during a heightened moment of pleasure adds to the experience.

  Spasticity can also be a hassle during sex. For one thing, spasticity can lead to contractures. This can then prevent certain sexual positions. Your best bet is to maintain your range of motion as outlined by your therapist. During your therapy process, you may also learn to position and move your body in ways that will allow you to control your spasticity.

  Positioning yourself for sex will be your choice. It will also vary with the type of sexual activity in which you wish to engage. Consult with your doctor for any possible limits. Your therapist may be a good resource of options for positioning during sex.