Sex & Spinal Cord Injury

"Sex is something you do, sexuality is something you are."
Although sexual adjustment of some kind is a fact of life for many persons with disabilities, frank discussion about sexuality and disability still remains a profoundly personal and sensitive topic. One reason is that sex (which has come to mean sexual intercourse) and sexuality (which embraces the whole self) are very often merged in people’s minds. Such confused thinking can easily produce the "you’re as good as your sexual performance" syndrome.
Another reason is that not enough health professionals have integrated sex education and counselling into their personal practice or rehabilitation setting. To be successful, rehabilitation must address people’s physical, emotional and social needs. Getting the facts about the sexual implications of your condition is an important part of this process. But so is integrating this knowledge into your relationships with partners, family, health attendants and co-workers. That’s where some people could use support from health professionals.
Just how well is the health profession doing with respect to sex education and counselling in rehabilitation programs? A recent study by Mitchell S. Tepper, M.P.H., of 458 members of the American National Spinal Cord Injury Association revealed an obvious gap between services needed and services offered in a rehabilitation program. To meet the needs of persons with spinal injury, the study suggested that a program include:

- discussion of sexuality initiated at an early stage;

- a combination of written materials, videos and individual counselling;

- four or more sessions dedicated to topics related to sexuality;

- consultation access to other persons with spinal cord injuries who have more sexual experience; and

- the individual’s physician being open and available for consultation.

While not all disabilities are the same, the issues remain the same for every person with a disability who has experienced altered sexual function, according to Dr. Michael Barrett, Ph.D., professor of zoology at the University of Toronto and chairperson of the Sex Information and Education Council of Canada (SIECCAN). These issues include sexual desire and response, partnership functions, bowel and bladder functions, fertility and contraception, mobility (positioning, caressing, etc.) and the effects that changes in these things can have on self-image and self-esteem.
Both sexes can have their sexual response altered by some disabling conditions such as spinal cord injury. A study by Meredith E. Drench, M.Ed., P.T., found that men place high value on performance. Any challenge to their sense of sexual adequacy, for example, changes in erection, ejaculation and fertility, can affect basic psychological needs and greatly impede overall adjustments and acceptance of their disability.
Women with cord injuries, on the other hand, adjusted better because they have traditionally placed more value on the intimate interpersonal relationship aspects of sexuality such as tenderness, care and concern. Their genital function loss is also considerably less and therefore these women’s sexual adjustment may be easier. Kettl et al., in "Female Sexuality After Spinal Cord Injury", report that women can often experience orgasm after spinal cord injury. Even women with complete spinal injuries may experience a buildup of sexual tension and release that, although different from before their injury, is physically and psychologically satisfying.
It is noteworthy that considerably more research exists on male sexuality after spinal cord injury than on female sexuality. According to Kettl, "the reasons for this are not entirely clear. Since only one in five spinal cord injuries occurs in a woman, this lack of information may reflect a lack of knowledge in a specialized area in a less affected population. However, medicine has ignored sexuality and especially female sexuality far too often and the lack of data concerning female sexuality may simply reflect this overall trend in medicine."
Contrary to well-established myths about persons with disabilities, men and women with spinal cord injury continue to have sexual feelings and can achieve sexual satisfaction depending on the level and extent of injury. For this reason, proper assessment of the injury by medical personnel is very important and a sexual history is helpful.
In the case of men, Drench reports that, generally, the higher the lesion, the greater the likelihood of erection, and the lower the lesion, the greater possibility of ejaculation.
Attaining an erection is not as problematic as having orgasm and ejaculation. Paraplegic women, along with experiencing orgasm, can conceive normally and carry babies to full term, often giving birth through vaginal deliveries. Since fertility is rarely affected, it is important to consider appropriate contraception options.
Men, however, experience low fertility following a spinal cord injury. This may be due to lack of erection or ejaculation or testicular atrophy with the absence of spermatogenesis. Since more than 90 per cent of men with spinal cord injuries experience serious decreased fertility, vibratory and electroejaculation techniques have been used to induce semen emission that can be used for insemination. Barbara Rines, R.N., a sexual health nurse at the G.F. Strong Rehabilitation Site in Vancouver, described this fertility enhancement procedure for men in the Winter 1992 issue of the Canadian Journal of Sexuality.
If you’re curious about what techniques can help you and your partner with sexual response and enjoyment, you may find some listed by Drench quite suitable to your needs. Sexual feelings can stimulate an erection for men with incomplete injury who have some body function and feeling below the level of the injury. Seeing what works is a good idea, for example by trying manual caressing of the penis, gently pulling at the pubic hair, anal stimulation, placing a finger in the rectum or slapping the thigh.
If erection is unpredictable or not possible, the recently developed Synergist erection system, or other such devices, is one possible alternative. This is an external device, simple, safe and effective to use and non-invasive, says Drench. Persons with spinal cord injury have rated it as very good to excellent in effectiveness and its contribution to satisfaction with their sex lives.
Maureen E. Neistadt, M.S., O.T.R./L. and Maureen Freda, O.T.R./L., in Choices, A Guide to Sex Counselling with Physically Disabled Adults, suggest a variety of possible adjustments that people with different disabling conditions can make. For example, they stress careful attention to urinary function and hygiene so that people can feel more relaxed in sexual situations. Here are some of their suggestions:
Bowel and Urinary Incontinence

- You might remain on the same bowel and urination schedule that you started in the hospital. This way you would know at what times it would be safest for you to have sex.

- Discuss the possibility of an accident with your partner to avoid embarrassment.

- Keep towels handy in case of bowel accidents and protect your mattress.

- Avoid excessive intake of fluids before sex and attempt to void prior to sexual activity.

- In the case of urinary leakage, men may use a condom for small amounts of leakage. Before sex, thoroughly cleanse the penis. If your physician gives approval, you could credé prior to having sex. This involves pressing inward and downward on the lower abdomen to help empty the bladder and should be done several times in succession.

Catheters

- Ask your physician about the possibility of removing your catheter occasionally for sexual activity. If you can remove the catheter, be sure your bladder is empty beforehand.

- If you must leave the catheter in, try placing it in a convenient position. Then you could tape the tube securely to your stomach with paper tape. Women may find it more comfortable to use a rear entry position in this situation. Men can fold the tube back over the penis and either tape the tube with paper tape, or place a condom over the penis and tube after the penis is erect. Additional lubrication may be needed for more comfortable entry.

- Discuss your catheter with your partner to prevent surprise and embarrassment.

- If you’re worried about your catheter leaking, keep towels handy and protect your mattress.

- Place drainage bags securely in a convenient place. Ask your physician if you can temporarily clamp the catheter and remove the drainage bag during sex.

If you require intermittent catheterization, then you may wish to be catheterized before engaging in sexual activity. If you need a suprapubic catheter:

- You may want to use a long drainage tube to give yourself more freedom to manoeuvre. In this case the collecting bag can be placed securely out of the way.

- Try taping the draining tube down to your stomach to prevent excess pulling or pressure on your catheter.

- You may find certain sex positions make it easier to keep the drainage tube in.

Clearly dealing with the issues mentioned above requires effective communication. This includes everything from planning sexual activity, communicating likes and dislikes non-judgementally, sharing sexual fantasies and other ways of enhancing arousal to dealing honestly with anger, fears, frustration and sense of loss. This kind of communicating can be particularly important when there has been loss of sensation associated with the disability.
Loss of sensation can vary and there may result the inability to accurately feel pain, temperature changes, pressure or touch over one or several parts of the body. There may also be difficulty in telling how the arms or legs are positioned without looking at them. Be aware of what parts of your body have experienced sensation loss, and to what degree, and discuss this with your partner. Together you can explore unaffected parts and discover new erogenous zones -- often it is the skin right next to the area of sensation loss -- that can compensate for the loss of pleasure in the affected parts.
In addition to the facts and techniques men and women learn about their sexuality and disability, access to user-friendly literature is essential. Although there is an abundance of helpful literature for both professionals and the general public that deals with varied aspects of sex education, counselling, therapy, research, ethics, etc., Dr. Barrett says that much of the literature on sexuality and disability has been written for a professional audience. While some associations now distribute non-technical material on the sexual implications of specific disabilities, much remains to be done, he says: "To my knowledge there is no single ’clearing house’ in Canada through which people can obtain access to this growing body of literature."
Where to find the literature and videos and who has them will be addressed in the next issue of ABILITIES.

(Vida Jurisic is a freelance writer living in Toronto.)

THERE IS A SEX LIFE AFTER DISABILITY

It’s Okay! is a frank new quarterly newsletter that talks about sexuality, sex and toiletting with honesty and an upbeat attitude. Launched by Linda Crabtree in St. Catharines, Ontario, it is consumer-written, published quarterly and aimed internationally.
"[It’s Okay!] addresses a topic that has been ignored too long," Linda comments. "People can write to me and get answers through a group of professionals I have available to me. It is a service as well as a newsletter."
The inaugural issue of It’s Okay! includes a profile of 26-year-old model Wendy Murphy, reviews of new publications about sex, and a column on personal hygiene. Linda hopes to "get the message out to people that there is a sex life after disability."

link:http://www.enablelink.org