Sexuality for Women with Spinal Cord Injury

Sexuality is an expression of one’s self as a woman or a man. It is intimate in nature, which means it is personal and private. Sexuality is commonly expressed through physical and emotional closeness. Most people consider sexual activities as a means to express physical intimacy. However, it is more than sexual intercourse. Physical intimacy can also be expressed through holding hands, hugging and kissing. Likewise, emotional intimacy is more than feelings that result from physical contact. Emotional intimacy can be a connection with one’s self that results in feelings of self-satisfaction, confidence and worth. It may also be a feeling of trust in another person and a willingness to share personal thoughts and feelings.

After Spinal Cord Injury

As a woman with spinal cord injury (SCI), you have probably discovered that education is the key to  managing issues that are part of life after injury. Sexuality is a part of life, so you can learn the facts about how your injury might impact your overall sexuality.

Sexual Function
In actuality, there are no physiological changes after injury that prevent women from engaging in sexual activity. The only significant impact on sexual function after injury seems to be the inability of some women to produce vaginal lubrication. This problem is likely the result of the interruption in normal nerve signals from the brain to the genital area.

Typically, lubrication occurs as a psychogenic (mental) and reflex (physical) response to something sexually stimulating or arousing. The purpose for this lubrication is to allow easier vaginal penetration, so a lack of vaginal lubrication can result in pain during intercourse. Women who can no longer produce lubrication can substitute water-based (never use oil-based) lubricants such as KY Jelly.

Depending on your level and completeness of injury, you will likely experience some, or all, loss of muscle control and sensation. For many women, this loss of muscle control means an inability to tighten vaginal muscles. Therefore, there may be less friction during sexual intercourse.

Some women may be able to improve friction. For example, you may be able to contract urinary muscles for added vaginal tightness. You may also try different sexual positions. If you continue to have difficulties, talk to your doctor about treatment options.

An orgasm is the intense physical pleasure at the height of sexual arousal. It usually involves vaginal contractions followed by a feeling of relaxation. In a Model Systems study (Jackson, 1999), a little over half (54%) of women with SCI engaging in sexual activity reported experiencing orgasm and another 30% reported extragenital pleasure. However, orgasms generally vary in type and intensity among all women, so it is difficult to determine whether or not spinal cord injury actually impacts a woman’s ability to achieve orgasm. In fact, some women, including women with SCI, have reported having orgasms after breast and upper body stimulation (McClure, 1992).

Fertility
It is normal for most women to experience a brief pause in their menstrual cycle after a spinal cord injury. This pause may last for as much as 6 months after injury before the menstrual cycle resumes. However, a study involving the Model SCI Care Systems (Jackson, 1999) showed that 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.

Sexual Adjustment

As discussed in our InfoSheet #20 (Adjustment to SCI), there are two areas of adjustment. It takes time to get use to your life and body after you are first injured. For example, you may feel uncomfortable with the changes to your body, or you may still hope to regain additional movement and sensation. You will also experience a continued process of adjusting to the unique issues that occur in your every day life as a woman with SCI. One example is that you may have to make adjustments in the way you manage your bladder or bowel.

Sexual Adjustment is an important part of life after injury. For example, there may be some people who believe that women with SCI cannot, or should not, engage in any type of sexual activity. They may assume it is impossible for someone with an absence of movement or sensation to become sexually aroused. They may believe that women with SCI cannot enjoy sexual activities. These are perfect examples of false assumptions about sexuality after spinal cord injury. Women who know the facts about living with SCI understand that the loss of movement or sensation does not mean a loss of pleasure. Women with SCI can, and do, resume active, enjoyable sex lives after their injury.

Issues with body image can be a primary area of concern for women with spinal cord injury (see Table 1). It is an important issue because how you feel about yourself can influence your desire to engage in sexual activity. If you have a negative opinion of the way you look, you will likely feel sexually unattractive. You may also assume that others do not find you sexually attractive.

As you adjust to your new condition, you will likely become more comfortable with your body. Hopefully, you will soon see that you have qualities that make you sexually attractive. When you see yourself as desirable, it is easy to believe that others also find you attractive.

No matter what your level of injury, there are some simple facts to remember:

• you are a sexual being;
• you have the ability to give and receive pleasure;
• you have sexual desires;
• you are desirable;
• you have the opportunity to meet someone, fall in love, and marry;
• you can engage in sexual activities; and
• you can become pregnant and have children.

Many women worry about whether or not they can maintain a relationship after injury. It is the same for all couples; you cannot predict the success of a relationship. It depends on a number of factors such as personal likes and dislikes, common interests, and long-term compatibility. When you consider that about half of all marriages end in divorce, it is obvious that relationships are not easy.  It takes hard work whether you have an injury or not.

Some women also wonder whether or not they can meet someone and establish a relationship after injury. If you put yourself in a position to meet new people, you have exactly the same choice that you had before your injury. It does not matter whether someone asks you for a date or you ask someone; the answer will be either “yes” or “no.”

Anytime you are in a relationship after injury, it is very important that your partner understand the facts about sexuality. When your partner understands the issues, sexual adjustment becomes easier for both of you. You can talk about issues of sexuality and work together to solve problems. This partnership is also a great way to gain emotional intimacy.

While you and your partner are working together to solve problems, it is important to remember that sexual adjustment takes time. Both of you probably have many concerns about sexual activity. In fact, you may share some of the same concerns. You will likely have unexpected problems or setbacks. The thing to remember is that you can solve problems if you work together. It might help to use humor to ease any tension. You know that you have solved a problem when both you and your partner are happy with the outcome. If you continue to have difficulty with some issues, it may help to talk to a physiatrist (doctor who specializes in rehabilitation medicine), a urologist or gynecologist who is familiar with issues of SCI, or even a professional counselor to help you resolve problems.

Areas of Concern

Table 1 lists ten common areas of concern for women with spinal cord injury. These concerns are more common right after injury, but you may continue to have concerns about sexual activity long after injury. No matter what the concern, you and your partner can talk about it and be prepared if problems occur. As you learn about managing your areas of concern, you will probably become more at ease with sexual activity.

¹Table 1 - Areas of Concern about Sexual Activity

1    Urinary Accidents
2    Bowel Accidents
3    Not satisfying a partner
4    Feeling sexually unattractive
5    Others viewing me as sexually unattractive
6    Not getting enough personal satisfaction
7    Preparation too much trouble
8    Hurting self
9    Loss of interest
10    Not liking methods for satisfaction

Bladder management is a major concern for many women with SCI. There are a number of ways that you can help reduce the chance of urinary accidents. First, limit your fluid intake if you are planning a sexual encounter. Drinking too much fluids increases urine output and causes the bladder to fill more quickly (see our InfoSheet #11 for more information on bladder management). Women who use intermittent catheterization for bladder management can empty their bladder before engaging in sexual activity.  Women who use a Suprapubic or Foley catheter may have concerns about the tubing. If the catheter tube is carefully taped to the thigh or abdomen so that it will not kink or pop out, it should not interfere with intercourse. The Foley can be left in during sexual intercourse because the urethra (urinary opening) is separate from the vagina. If you want to remove the Foley catheter before sexual activities, you must make sure that the catheter can be properly reinserted following sexual activities.

Bowel management is another concern for women with SCI. The best way to avoid accidents is to establish a consistent bowel management program (see our InfoSheet #9 for information on bowel management). Once you establish a regular program, you are much less likely to have an accident. You may also want to avoid eating right before engaging in sexual activity and make sure that your bowel is empty.

Sexual satisfaction can be a concern for many women with SCI. You may wonder whether or not you can be sexually satisfied or satisfy your partner. Some women may be uncomfortable or unsure of available methods for gaining satisfaction. If you have any concern, it is important to talk to your partner and work together to find mutual satisfaction.

As you and your partner work together, it may help to try different methods to give and receive physical pleasure. Some couples may find that they still enjoy many of the same “old” methods for gaining sexual satisfaction. However, those “old” methods may not work with your new condition. Sexual exploration can help you and your partner enhance your physical pleasure. The goal is for both you and your partner to gain mutual satisfaction. Hopefully, you will then find that sexual activity is interesting and enjoyable.

Sexual Arousal

Sexual arousal is the emotional and physical process of stimulating excitement and readiness for sexual activity. Emotionally, you will likely find that you are still aroused by the same things as before your injury. These emotionally stimulating activities might include dressing up, a romantic dinner, dancing, and good conversation. However, you may or may not find it more difficult to identify areas of physical arousal. Again, this is another opportunity for sexual exploration. It may help to know what other women with SCI find physically arousing. Table 2 identifies areas of physical arousal reported by women with SCI.

²Table 2 - Areas of Sexual Arousal

• Mouth and lips
• Neck and shoulder
• Stomach
• Clitoris
• Thigh
• Feet
• Ears
• Breast
• Buttocks

In a  Model SCI System study (Jackson, 1999), 87% of women with SCI reported participating in sexual activity before their injury compared to 67% after injury. Although the likelihood of participating in intercourse after injury did increase with time after injury, many women are not engaging in sexual activity.

If you are hesitant to engage in sexual activities, it is important to understand what is holding you back. You may be adjusting to your injury and not yet comfortable with your body. You may have one or more of the concerns listed in Table 1. Once you identify problems, you can work to solve them.

If you are newly injured, you may want to try self-exploration to help ease some of your concerns over sexual activity. Depending on your level of injury,  you might begin to experiment with manual (touch) stimulation or the use of a vibrator on various areas of your body. This can also help you identify those areas that are sexually sensitive or stimulating.

Couples can also explore ways to express physical intimacy. It might be helpful during the time of your sexual adjustment to start your sexual exploration with simple acts of hugging, kissing, and touching. As both you and your partner express comfort with furthering your exploration, you may want to progress to sexual stimulation, oral sex, vaginal and anal intercourse, or other means of physical intimacy.

It may also be necessary for some couples to explore a variety of sexual positions to find comfort during sexual intercourse. This exploration may be needed if spastic hypertonia (muscle spasms or contractures) or pain occur during sexual activities. If spastic hypertonia or pain is a problem, it is recommended that you talk to a physiatrist (see our InfoSheets #10 on Pain Management following SCI and #16 on Challenges of Spastic Hypertonia).
 
Other Potential Problems

Autonomic Dysreflexia
Individuals with SCI should be watchful for signs of Autonomic Dysreflexia (AD), a life-threatening condition. Signs of AD include flushing in the face, headaches, nasal congestion and/or changes in vision.  If you experience signs of AD at any time during sexual activity, you should stop all activities immediately.

Abuse
Unfortunately, some women find themselves in abusive relationships. The abuse can be verbal, physical or both. The chances of getting into an abusive relationship are greater for women who have low self-esteem. If you are in an abusive relationship, you can talk to someone like your doctor or clergy to find local agencies that help women escape abusive relationships.

Sexual Dysfunction
In recent years, the medical community has made great strides in addressing the sexual difficulties of women. These difficulties are most often a lack of desire to participate sexual activities or a failure to achieve satisfaction. There are treatment options available, so talk to your doctor if you think sexual dysfunction might be impacting the quality of your sex life.

Aging
Aging might impact your sexuality in many ways. For example, you may have a decline in sexual interest, and you may notice a decrease in vaginal lubrication after menopause. Although you may experience some changes in your sexuality as you get older, there is no reason why you cannot continue to enjoy an active sex life late into life.

Conclusion

Sexuality does not have to change after spinal cord injury. As a woman with SCI, you can still express your sexuality both physically and emotionally. However, it is important for you to learn about how your injury can impact your mind and body. When you work to prevent potential problems and learn how to manage difficulties, you give yourself a chance to explore, express, and enjoy your sexuality no matter your level of injury.

References

- Jackson AB. Medical management of women with spinal cord injury: A review. Topics in SCI Rehabil, 1995;1(2)
- McClure, S. Female sexuality and spinal cord injury. Arkansas Spinal Cord Injury Association Fact Sheet #8, 1992
- ¹White, MJ et al. Sexual activities, concerns and interests of women with spinal cord injury living in the community. Am J Phys Med Rehabil, V72(6), 1993
- ²Sipski, ML, Alexander, CJ. Sexual activities, response and satisfaction in women pre- and post-spinal cord injury. Arch Phys Med Rehabil, 1993;V74
- Jackson AB, Wadley V. A multicenter study of women's self-reported reproductive health after spinal cord injury. Arch Phys Med & Rehab 1999;80