Chapter 14
Sexual Health and Rehabilitation

Sexuality is much more than what happens between two people in bed. When we talk of sexuality, we are not just talking about gender (male or female). People’s sexuality is shown in many ways such as the way they present themselves in interactions with others, clothing, their body image, hobbies and interests, 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, male or female, the change in or loss of genital sensation is one of the biggest impacts on sexuality. Many spinal cord injured people say that sex is much more intimate and spiritual than it was prior to their injury (instead of orgasms being just physical and focused on the genitals, they can be more a state of mind). These people have found much pleasure in discovering their own and their partners’ 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, how and where to touch, or things like bladder and bowel functions. Having ongoing discussions related to sexual functioning helps both the person with SCI and the partner to know what to expect.

In the past, the assumption was made that people with SCI were no longer capable or interested in sex. Today, we know this is not true. It is now recognized and increasingly accepted that sex, marriage, and being a parent can be a part of anyone’s life (this means with or without a disability). A physical disability does not eliminate sexual feelings. Individuals with SCI experience the same sexual feelings as do individuals without SCI.

You can lead a sexually active life, and you can maintain intimate relationships if you choose to do so. This chapter will provide information to help you accomplish these goals. The topics to be covered include myths and misconceptions about sexuality and disability, anatomy of sexual functioning, changes in sexual functioning after SCI, and effects of SCI on fertility and pregnancy (both male and female).

 
MYTHS AND MISCONCEPTIONS ABOUT SEXUALITY AND DISABILITY

Myth: It is not appropriate for health-care providers to discuss sex with patients.
FACT: Sex is a natural part of life. It deserves attention in your rehabilitation program. Sex and sexuality are health issues and should be discussed between you and your health-care providers.

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 react to you in the same way they did before you were injured. You may also find that new people you meet may 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 the 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 frightening. Spinal cord injury sex education is one way 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. Through education, exploration, and experimentation, mutual satisfaction is again possible. You will get to know your body much better than you did before you were injured. You will also likely learn how to do some sexual acts in new ways. This is discussed in more detail in the next section.

Myth: Marriage and parenting are no longer options for people with SCI.
FACT: People with spinal cord injuries do fall in love. Marriage often follows. Men and women who are spinal cord injured do have success in bearing 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. You need to explore your body for sensation, movement, and reaction. To successfully guide your partner, you need to know the territory. In doing so, you can obtain sexual satisfaction for yourself and your partner. Keep in mind that:

• The presence of spinal cord injury does not mean the absence of desire or romance.
• Inability to move does not mean inability to please or be pleased.
• Absence of sensation does not mean absence of emotions.
• Loss of genital functions and/or sensation does not mean loss of sexuality.

 
ANATOMY OF SEXUAL FUNCTIONING

This section will identify and describe areas of the body involved in sexual functioning.

 
The Male Sex Organs

 
The Female Sex Organs

 
SEXUAL FUNCTIONING AFTER SCI

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 genital sensation is ONE (but only ONE) part of the sexual experience, but you still can feel full sexual sensations above the level of your injury. This includes your ears, neck, face, and mouth.

Areas that are particularly sensitive and produce sexual arousal are called erogenous zones. Many people with SCI discover that areas other than the genital areas and nipples are sexually exciting when touched. Use them and also your other senses to heighten these feelings with the help of the largest sex organ of all--your brain. Sexual function requires a fine-tuned coordination of different parts of the nervous system. Think about people working together as a team on some goal. When some team member don’t do what they are supposed to do, the result may be that the goal is only partially achieved or not achieved at all. The same thing happens in spinal cord injury: some nerves cannot do what they used to do.

In males, the changes after SCI are typically in erection, ejaculation, and orgasm or climax. The lack of, or decrease in, feeling and movement may also change the sexual experience. In women, changes in sexual function include decreased ability to lubricate and orgasm.

 
Male Sexual Function

Erections

There are two types of erections: psychogenic and reflexogenic. Each involves different parts of the spinal cord. The degree to which each one is affected depends upon where and how complete or incomplete your injury is.

• Psychogenic (SIGH-ko-JENN-ick) Erections. These erections occur from sexually related thoughts (fantasy), seeing a good looking person, looking at erotic pictures, reading sexually exciting material, or hearing sounds that are sexually stimulating. 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 (re-FLEX-o-JENN-ick) 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 S2, S3, or S4 segments of the spinal cord. This is present in cervical, thoracic, and lumbar (upper motor neuron) 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 a reflexogenic erection, it is important to remove the sexual stimulation after you and your partner are finished. If not, the penis can remain erect for a long time, which can cause some medical problems.

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. See the section on Adaptive Equipment and Medications to Enhance Male Sexual Functioning for a discussion of options. Feel free to discuss these options with your physician or other rehabilitation team members.

 
Orgasm

Orgasm is the pleasurable sensation generally associated with rhythmic contractions of the perineal muscles and the base of the penis. It may also be a psychological means of achieving pleasure, as in the absence of tactile sensations or loss of ejaculation.

 
Female Sexual Function

Lubrication and Arousal

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 level of your spinal cord. For women who are not able to lubricate, you may wish to use a water-soluble jelly to enhance lubrication. It is not advisable to use vaseline or any oil-based product or any perfume-based material because these do not dissolve in water and can become a source of infection.

 
Orgasm

Orgasm is the culmination of sexual excitement. There is little information regarding orgasm in women with SCI. This is an area of continued interest and investigation.

 
ADAPTIVE EQUIPMENT AND MEDICATIONS TO ENHANCE SEXUAL FUNCTIONING

Male

Vacuum Pump

Vacuum erection/constriction devices are the least invasive and least expensive of current treatment options. The device produce an erection by creating a vacuum around the penis, which triggers blood flow into the corpora cavernosa. The erection is maintained by using a tension band or ring placed around the base of the penis. Although this method seems fairly simple, it is very important to receive "hands on" instruction with your practitioner. Preparation requires viewing a video and reviewing written information.

 
Penile Injections

This choice involves giving a shot into the penis about 20 minutes before sexual activity. Alprostadil is the FDA approved drug used in injection therapy. The dose of Alprostadil is individualized and therefore testing and training are necessary. It is very important for the man or his partner to feel comfortable about his receiving a shot into the penis (corpora).

 
Transurethral Therapy (MUSE)

This is a urethral suppository (Alprostadil). There are very specific instructions needed to use this form of therapy. It is important for you to receive training for this form of therapy.

 
Viagra (Silendafil Citrate)

Viagra is the first FDA approved oral agent for erectile dysfunction. Viagra helps restore penile blood flow and erection in response to sexual stimulation. Once again, it is important that you receive instructions about this medication. Viagra is ABSOLUTELY contraindicated in patients using medications that contain nitrates in any form.

 
Penile Prothesis

These are silicone rod devices implanted in the penis that have fluid chambers to simulate a true erection. An important consideration for patients and partners is that this is an invasive procedure (surgery) and is considered irreversible. All other feasible options should be investigated prior to discussion of penile implant surgery.

 
Final Note

In order for any treatment to be successful, it is advisable to include your partner in information and learning sessions.

 
Female

The overall quality and quantity of information concerning sexual functioning for women with SCI are poor. Most discussions are centered on bowel and bladder management, with some emphasis on return of "normal menstruation" and the need for protection if sexually active.

Women are interested in learning how to achieve sexual satisfaction when sensation is lessened or gone. Self stimulation or the use of vibrators can enhance sexual discovery or rediscovery. Questions often asked are related to "how can I have a satisfactory and fulfilling sexual experience?" Answers and solutions often come about through personal exploration or work with a partner. There are currently many research projects underway that are studying sexual functioning of women in general. One study is currently investigating the use of Viagra in enhancing sexual arousal.

The area of sexual functioning with women who have a SCI is open for much discussion as well as further research investigation. Communication with your provider will keep you up-to-date on improvements and new findings.

 
SCI AND INTIMACY

Compared to before your SCI, sexual activity now requires some planning, and the idea of spontaneous sex may change 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 health-care provider may have suggestions as well as more reading material.

 
Things to Think About Before Sexual Activity

Preparation will enhance and not destroy the moment.

Autonomic dysreflexia (AD). In some individuals, sexual activity can cause episodes of AD. You need to be able to recognize AD, know how to treat it, and be prepared. See the chapter on Autonomic Dysreflexia.

Bladder Management. It 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 is the best insurance against incontinence. Catheters and other urinary equipment may be removed prior to sex. It is your choice. If you do not wish to remove them, listed below are some things to consider.

• 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.
• Men can bend a foley catheter against the shaft of the penis and place a condom over it. 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. However, some people prefer to remove their catheters before sex and replace them after sex. You, your partner, or attendant will need to be taught catheter change. Have the supplies ready to replace the catheter following sexual activity.
• Women not wishing to remove their foley catheter will often tape the tubing to their stomachs or upper thigh area.
• 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.
• If you have a suprapubic catheter, tape the tubing out of the way. 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 proper preparation and planning. People without spinal cord injuries sometimes have problems with incontinence too. 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.

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

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

If you require assistance to transfer, position, undress, or handle hygiene, you may need to include your attendant, caregiver, or partner to prepare for sexual activity. These activities can always be made a part of foreplay. Positioning yourself for sex will be your choice. It will also vary with the type of sexual activity in which you wish to engage. Check with your practitioner, physical therapist, or occupational therapist for any possible limitations in positioning.

Surroundings. Sexual activity is always better in a setting that is comfortable for both of you. Think about your surroundings. Where are you most comfortable having sexual activity (e.g., your wheelchair, a bed, couch, hotel)? Environmental barriers may limit accessibility for sexual activity. For example, a person with SCI may have an accessible residence but a partner’s residence may not be accessible.

Spasticity. Some people use spasticity to help heighten sexual pleasure. In some cases, spasticity can be used to obtain an erection. Leg extension or spasticity may increase the sexual experience.

Spasticity can also be a hassle during sex. Spasticity can 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 minimize your spasticity.

Diseases. Sexually transmitted diseases (STDs) can affect sexually active individuals with SCI as easily as anyone else. Always practice safe sex. 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 will decrease the risk. You can contact your health-care provider, the local AIDS hotline, or Department of Health for more information. If you notice any abnormal discharge or any abnormalities of the skin on your genitalia, consult your health-care provider for an examination.

 
FERTILITY AND REPRODUCTION

 
Pregnancy - The Male Perspective

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. Any fluid from the penis could contain sperm. The ability to impregnate a woman varies with each man. However, two problems are common in males with SCI: inability to ejaculate and poor semen quality. Semen samples can be obtained and analyzed at many major medical centers. It doesn’t matter if you can ejaculate or not as techniques exist to assist ejaculation. If you cannot ejaculate or can but have not been successful in getting your partner pregnant, referral to a specialized urology clinic for further evaluation is possible. These clinics can conduct an analysis of your fertility (the ability to father children). Specialized procedures can be used to retrieve sperm that can then be inseminated into a partner. Many issues regarding fertility and reproduction are handled by these specialty clinics.

Vibratory stimulation to produce semen is accomplished with specially designed vibrators that have adjustable frequency and amplitude. Education on the procedure is done in the clinic, as well as the first trial. This provides semen for analysis. Thereafter, people with SCI at T7 or below can carry out the procedure at home to get semen for insemination. Training includes recognition of ovulation in the partner to make conception more likely.

Electroejaculation. Electroejaculation involves using a rectal probe to apply electrical stimulation that causes ejaculation to occur. These techniques can be used to obtain samples to be tested for fertility or used for artificial insemination. Sometimes several samples are combined to increase the quality of the sperm so that there is a greater chance of success of insemination procedures. If you are interested in more specific information, talk to your practitioner and a referral will be made if appropriate.

Artificial Insemination. Artificial insemination is the introduction of sperm into the vagina or cervix by artificial means. Sperm that was collected by vibratory stimulation or electroejaculation can be used in this procedure to increase the likelihood of fertilization. Prior to artificial insemination, both male and female fertility may be tested. If a couple desires children but the sperm of a male is of poor quality and cannot be used, another option is artificial insemination with the sperm of a donor. This will require a referral to a specialty center.

Adoption. Adoption is another alternative for anyone who desires to have and raise children. Adoption agencies and programs can help you decide if it is the right choice for you. These programs can also inform you about legal procedures. Both married and single people can apply for adoption. You cannot be discriminated against because you are a person with a disability. If you feel you have been denied these services because of your disability, treat this situation the same as any other case of discrimination. See the chapters on Community Resources and Psychosocial Adjustment for more information.

 
Pregnancy - The Female Perspective

It may take spinal cord injured women up to a few months following injury to have a period (menstruate) again. Once menstruation returns, pregnancy can occur. If you don’t want to get pregnant, you’ll need to practice birth control. You should discuss all birth control options with your practitioner.

Artificial insemination and adoption are also options for women with spinal cord injuries who desire to raise children. See the discussions above in Pregnancy - The Male Perspective.

When you are pregnant or considering becoming pregnant, talk with your gynecologist about special medical considerations related to your spinal cord injury.

 
SEXUAL COUNSELING

These services are a response to the growing number of people, disabled or not, who want to know more about their sexuality. Sexual counseling is now available for individuals or partners. Seeking professional advice or counseling is not always easy to do but you should focus your attention on obtaining as much information as you feel you need. There are different kinds of counseling for different problems.

Most major medical centers have these services available. Various SCI organizations as well as the internet may be able to help you identify services in your local area. The guidance below will make it easier for you to find the help you need.

 
Getting Started

On the whole, the most difficult part of the process is bringing up the subject and saying what the problem is. Don’t get discouraged!

Is the problem related to genital function? This includes changes in your ability to have or keep an erection or in vaginal lubrication. If so, consult your urologist.

Is the concern more related to a sexual relationship, lack of one, or a desire to feel better about your sexuality? Your practitioner or local mental health center will be able to counsel you or refer you to a counselor in your community.

If you are concerned about your ability to become a biological parent, you will need to speak to a fertility specialist.

 
Finding a Good Counselor

While you were in an SCI unit, you could get counseling on most sexual issues from the SCI team. Counseling is also there for you through the SCI outpatient clinic, specialty clinics within the hospital, or another agency in your community. You may be purchasing their services. A smart consumer needs to know what he or she is buying. Here are a few good questions to ask the counselor. Remember, the type of individual(s) you need to see, such as a therapist, urologist, fertility counselor, will depend upon the issues or concerns you are seeking assistance for.

• How much experience do you have in sexual counseling?
• What type of training or professional degree have you received?
• Have you worked much with clients who have disabilities?
• How long will I need to see you and how much will it cost?

• Do you have an interest in working with clients who have disabilities?
• Would you be willing to consult the SCI service for more information about spinal cord injuries?

Some sexual counselors may not have experience with clients who have disabilities. This doesn’t mean that they are not good at what they do. More to the point is their willingness to uncover facts about spinal cord injuries when they are needed.

Not all sexual concerns are due to your disability. Sexual and relationship problems can occur in anyone’s life!

One way to get practical information about the issues discussed in this section is to talk with other people with disabilities. Some communities provide peer support groups or independent living centers. These can help you find a peer who has found a way of sexually adapting to a disability. Your SCI team may also be a source of information about resources in your community.

Books, magazines, pamphlets, and web sites are also ways to obtain information. Examples of sources are listed below but this list is by no means comprehensive. Web sites may also contain references as well as links to other web sites.

 
RESOURCES

 
Publications

Sexuality After Spinal Cord Injury: Answers to Your Questions.
S. Ducharme and K. Gill. Brookes Publishing Co., Baltimore, MD, 1996.

Reproductive Issues for Persons with Physical Disabilities.
S. Haseltine, S. Cole and D. Gray. Brookes Publishing Co., Baltimore, MD, 1997.

Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being
D. Krotoski, M. Nosek and M. Turk. Brookes Publishing Co., Baltimore, MD, 1996.

 
Web Sites

www.sexualhealth.com
Dedicated to providing access to sexuality information, education, counseling, therapy, medical attention and other resources for individuals with disabilities.

 

SCI Self-Care Guide Main Page Chapter 1     SCI Anatomy & Physiology Chapter 2     Skin Care Chapter 3     Circulatory System Chapter 4     Respiratory Care Chapter 5     Range of Motion Chapter 6     Bladder Management Chapter 7     Bowel Management Chapter 8     Nutrition Chapter 9     Medications Chapter 10   Nerves, Muscles, and Bones Chapter 11   Autonomic Dysreflexia Chapter 12   Pressure Sores Chapter 13   Psychosocial Adjustment Chapter 14   Sexual Health & Rehabilitation

Chapter 15   Community Resources Chapter 16   Vocational Rehabilitation Chapter 17   Recreation Chapter 18   Driver’s Training Chapter 19   Attendant Management Chapter 20   Home Modifications Chapter 21   Approaching Discharge Chapter 22   Pain after Spinal Cord Injury Chapter 23   Substance Abuse and SCI Chapter 24   Exercise Chapter 25   Alternative Medicine Chapter 26   Equipment Chapter 27   Staying Healthy Glossary