Let's Talk Sex, Learning to Adjust After a Spinal Cord Injury, A Guide for Women
Special thanks to our patients and staff at the University of Wisconsin Hospital and Clinics. The sharing of their experiences helps to make this book a valuable resource for future patients and families.
A Word About Privacy---For most of us, talking about sex is a private matter. Americans like their right to privacy and will go to great lengths to protect it. While at the hospital, you will meet doctors, nurses, and social workers who will ask you questions about your sex life. You may be asked to share some thoughts and feelings you have never told anyone before. Keep in mind, this information can be useful in helping you and your partner learn to adjust. Yet, if you are uncomfortable talking about your sex life, just let us know.
Learning to adjust after a spinal cord injury (SCI) is an important part of your recovery. A spinal cord injury can affect your feelings about sex and how you perform. Yet, how you adjust sexually after SCI is up to you. Your doctors, nurses, psychologists, and social workers can help you and your partner with this change.
This book goes over basic issues from changes in body image to dealing with feelings of anger, depression and guilt. It looks at how SCI affects sex and how you might deal with these changes. The book is also designed to help you and your partner begin talking about the many changes and how you can cope.
Adjusting After a Spinal Cord Injury
After a SCI, your body goes through many changes. It may look different and this may change how you about your body. Adjusting to the changes takes time. There is no set time frame for learning about and dealing with a SCI. Likewise, there is no right or wrong way to cope. Here are some questions to help you to think about yourself, your body, and your ability to adjust. There are doctors, nurses, psychologists, and social workers to help you as you and your partner begin to explore these questions.
How has your role in life changed since your SCI? Have you experienced role changes within your family? At work? While playing or watching sports? If your role as a provider has changed, how have you and your partner been able to adjust? Can your partner to do your cares and also be your lover?
Many people find it is hard to adjust to all of these new roles. Learning to rely on others for help can be hard. At first, you may feel more at ease having your partner help with your personal cares. While this may be convenient, it is often hard for partners to switch gears from being caregivers to being lovers. Plus, the drain and time it takes to provide these cares can be overwhelming. Since being your lover should be your partner’s priority, you may need to hire someone to help with your cares. It is wise to talk about this option with your partner and with the staff well before you plan to leave.
Sex Role Issues and Expectations
What do you expect in a relationship? What do you expect of your sex life? Can you achieve it? What does your partner expect? Are you afraid of being rejected by a lover? Will this fear keep you from trying sex? Do you feel you are a worthwhile, loving person or do you feel like nobody could love you now? Do you feel like someone would want to have sex with you?
You may feel your roles have changed. Loss of function, dexterity, or mobility to any degree may make it hard to function in the role you were used to. You will need to create new self concepts and new roles. It will take time to adapt. It may be harder to deal with based upon your cultural background and religious beliefs. Your partner needs to understand and support you as you seek a new balance in your relationship.
You and Your Partner
After a SCI, you need to talk with your partner – especially as you rediscover each other in a sexual way. A couple needs to freely discuss changes in their sex life and how they plan to deal with them. Be honest and open in a gentle, caring way. This prevents any wrong ideas that could make you and your partner grow apart.
Talking With Others
Disability is not what you are – it’ssomething you have. The less you focus on it, the less important it may seem to you and others. People sometimes feel uneasy around someone with a disability. They don’t know about disabilities and they are unsure of themselves. Educate people, be yourself, and be casual about your disability. People will likely feel more at ease around you.
Making friends is really no different than before. Find friends where you used to meet people. You could meet that special someone in the same place you would have before your injury. Intimacy is knowing yourself and what you want from a relationship – not just finding the “right person” . Being attractive means more than how you look. It’s who you are.
Has your sex drive changed? Will you still have the same desire for intimacy?
A SCI does not affect one’s desire to have sex. Yet other physical and mental factors can affect your desire. Medicines can decrease your sex drive. Stresses and financial strain can cause distraction and conflict. This can further interfere with sex drive.
Body Image & Self Concept
What are the physical changes that have occurred? How do these changes affect how you feel about yourself and your body? How does the sight of medical equipment- urinary devices, wheelchairs, splints, braces- affect the way you feel?
Some feel overwhelmed with their body changes. As you become more familiar with how your body has changed and with the equipment you use, you may find your feelings about your body will change. This will take time. If you feel good about yourself, others with sense that feeling
Along with the SCI comes many feelings---anger, frustration, depression, and guilt. These changes are normal. We expect them. These feelings need to be dealt with to get life back in order. Here are some questions you might ask yourself as you or your loved one start to make sense of your feelings. As you begin to think about the questions, you may find you need some help. We are here to help you. Just ask.
Do you feel angry and ask, "Why did this have to happen to me?" Are you upset about the new changes and limitations in your life? Do you miss your previous lifestyle? Do you blame anyone for your SCI? Do you feel anger toweards your partner at times? Does that anger affect your relationship with your partner?
It is okay to feel angry. You need to get it out - reduce the anger - and move on with your life If you keep this feeling bottled up inside of you, it'll affect not only how you deal with your partner, but others, too.
People deal with anger in different ways. Sometimes talking with someone who's not personally involved can help. Find someone you feel comfortable with - a nurse, a psychologist, a social workers, a clergy member, or a friend. Let them know you need help.
Frustration and Resentment
Do you feel frustrated because you need to depend on others for things you'd rather do yourself? Are you impatient when things aren't done the way you'd like them to be done? Do you feel resentful of others? How do these feelings affect you and your partner?
Frustration and resentment are a common part of every spinal cord injured person’s rehabilitation. You need to find ways to deal with these feelings. They can harm relationships with your partner and others. Once you recognize these feelings, you’ll begin to find ways to deal with them. Again, talking to others can help put these feelings aside and help you move on.
Do you feel like you are a burden to others? Do you feel guilty that your partner has to take on more responsibilities? Do you feel your partner has had to put their life on hold?
Guilt can be a very common part of adjusting after a SCI too. The person who has had the injury often feels guilty for being a burden. The partner feels guilty for not doing enough. You and your partner may find it tough to discuss these feelings. This guilt can sometimes cause big gaps in communication. To make it even tougher, the guilt is often mixed with anger, frustration, and resentment. If you start to notice communications breaking down, ask for help.
Are you afraid of being rejected by your partner? Are you worried that things will not go as well as planned? Are you concerned about how you’ll perform? Will these thoughts keep you from starting or resuming a sexual relationship?
After the SCI, you may find yourself unsure of what to expect and afraid of failure or rejection. Sex will be different. At first, it may not be as wonderful as you want it to be. Do not let this discourage you from trying again. This is a time of adjustment. As you get to know your body again, things should improve with time and practice.
Do you have a hard time doing all the things you used to enjoy? Do you feel like nothing will ever be right again? Do you feel like your life is over and now you only just exist? Are you depressed about all of the changes in your life? How do these feelings affect you and your partner?
After a SCI, some people become depressed. If you feel depressed, let your doctor or nurse know.
Warning Signs of Depression
- feelings of hopelessness
- poor appetite
- too little or too much sleep
- trouble focusing or concentrating
- general feelings of sadness
- difficulty regaining interest in others
- lack of motivation
- feelings of guilt
- suicidal thoughts
While these things are not sure signs of depression, they are clues that you may need some help and support. Again, if you notice these signs over several days, let us know. We’re here to help.
Effects on Your Partner
At first, you may not be able to look beyond yourself to see how your partner has been affected. What has happened in your life will greatly affect both you and your partner. As you both adjust, you may be challenged by some of these questions and issues.
Depression, Anger and Guilt
How do the changes in your life affect your partner? Does your partner miss the way things used to be? How does your partner feel about new roles in life? How does your partner feel about having to take on new responsibilities? How do these feelings affect your sex life?
Just as you may feel depression, anger, and guilt, your partner might also feel them. If left unnoticed, these feelings can be very harmful. Talking with your partner and keeping your communication open can help. And again, if you feel you need help, ask.
Is your partner afraid that you could be hurt during sex? Does your partner worry about performance? Does your partner fear something could go wrong?
Most partners fear that they may hurt the person with a SCI. It is highly unlikely that this would happen. Even so, it is common for people to be afraid to start a relationship after having a SCI.
When you first try sex again, avoid setting expectations that it will be like it used to be. You and your partner may get frustrated and even angry when things don't work out as planned. this could prevent you from trying again. Therefore, go slow and relax. Be willing to try other approaches. Be patient with yourself and your partner.
Adaptation and Adjustment
Adaptation does not mean acceptance, but instead is a process of making changes in your life. You need to get on with your life. Don’t let your disability get in the way of doing things you enjoy like school, a job, or sports. Control your disability – don’t let it control you.
Change takes time. It affects both partners, yet it may not occur in each partner at the same time. Keep in mind that you may not have the same feelings as your partner all the time. It will help to be open, sensitive, and supportive of your partner. Counseling may be a good option for you. Sometimes talking with an outside person can help you and your partner to work through these changes.
It may be harder to move or position yourself. During sex, you may have less of a rise in your blood pressure, pulse, and breathing rates, and you may have less feeling in your genitals. Vaginal lubrication is also affected. Your fertility, however, is not affected.
Sexual Response Cycle
Knowing the sexual response cycle helps you to know how your body may respond. When you are aroused, blood rushes to the genitals. This results in an erection in males and vaginal lubrication in females. There are two types of vaginal lubrication:
- Reflexogenic - the kind you get by physical contact.
- Psychogenic – vaginal lubrication in response to mental arousal, i.e. fantasizing or watching something erotic.
The level of injury affects your injury at T12 or above is most likely to become lubricated by touching. If you have had a complete injury at T12 or above, it is unlikely that you will have vaginal lubrication from fantasizing or watching something erotic. But, if the injury is incomplete, it may be possible to be aroused mentally and have some feeling in the genitals.
A woman with a complete injury at T12 or below is most likely to respond to mental arousal, but not to touch. And, if your injury is incomplete, lubrication may result by using both physical contact and mental arousal.
If you have decreased vaginal lubrication, you can try using a water-soluble jelly (KY Jelly®). This will prevent irritation and damage to vaginal tissues. Do not use Vaseline® because it coats and clogs body tissue.
Preparing for Sex
Setting the Mood
Following SCI, getting ready to have sex can take time. You will need to allow extra time for bladder care, and to remove your clothes and get into bed. You may want to use these events as a part of foreplay.
Bladder and Bowel Care
The same reflex that is triggered during sex also controls the bladder and bowel. To prevent accidents, perform bowel and bladder care before sex. Try to limit the amount of fluids you drink for three to four hours before having sex.
If you use intermittent catheterization, do so just before and after sex. This can prevent injury and urinary tract infections.
If you have an indwelling catheter, it does not need to be removed. Tape the tubing to your stomach so it’s out of the way. Use extra tubing so you have plenty of room to move.
Sex can also trigger your bowels to move. If you perform regular bowel care, this shouldn’t be a problem.
In case of accidents, pad the bed well with a waterproof pad. If you have an accident, you can just remove the soiled linen and keep going
In general, sedatives, pain relievers, blood pressure medicines, muscle relaxants, and major tranquilizers may decrease sexual response. Caffeine, alcohol, and tobacco also affect your response. Talk with your doctor if you have any questions. Viagra has been used by some women to increase vaginal lubrication. Please discuss this with your doctor.
You may need to experiment to see if spasms interfere or help with positioning or movement during sex. If your spasms interfere, try a warm tub or shower, warmer room temperature, range of motion, relaxation, whirlpool, and deep breathing. If spasticity helps with movement, avoid medicines used for depression and spasms.
Although it is rare, sex or stimulation can cause dysreflexia in those who have an injury T6 or above. If it occurs, stop, sit up 90 degrees, and treat as appropriate. After this episode is resolved, you may continue with sexual activity.
You may want to shower, tub bathe, or sponge bathe before sexual activity to remove the odor from your groin area that comes from sitting all the time. This can be included as part of foreplay.
Movement and Positioning
To save energy, you will want to try a variety of positions. You might also want to use pillows, cushions, and folded blankets to keep you in place. Couples must be willing to experiment to find out what works best for them. Here are some suggestions to help you get started.
- Place yourself beneath your partner to allow your hands to be free and your partner’s hips and pelvis to thrust.
- Try having sex in a wheelchair. Remove the wheelchair arms and have your partner straddle over you.
- Lie side-by-side or face-to face to allow your arms and hands to move freely and to lessen any problems with balance.
- Sit up with your legs bent and wrapped around each other. Use pillows to help keep your position.
- Wrap arms around partner’s neck and shoulders; pull self up and down to produce pelvic lifting motions.
- Use a hand to push buttocks together to produce a feeling of vaginal contractions and increase the pressure on the penis.
- Find methods of positioning that will conserve your energy.
Sex drive is not affected by SCI, but spontaneity is. This may be due to concerns about mobility, bowel, and bladder. You can include these issues into foreplay. Use this time to increase your excitement for what’s ahead.
Within your comfort level, beliefs, and values, you may try fantasy, massage, use of sexual toys, oral sex, caressing, holding, or kissing instead of or in addition to intercourse to enhance the experience for both of you.
Use light and mirrors to help you to watch your partner’s reactions. Don’t forget to include all areas of your body even if you can’t feel them. Use your eyes to follow the movements. Use the memory of how those areas used to feel, along with the sights and sounds to heighten your excitement. Talking to one another about sensations may intensify them.
After spinal cord injury, you may not feel the same feelings from your genital area that you felt before your injury. Concentrate on feelings you get from your erogenous zones (nipples, earlobes, neck, underarms, area just above your level of sensation) while caressing and amplify it mentally to increase its
intensity. You also may be able to transfer a sensation from a less sensitive area to an area of retained sensation and intensify it in your mind. Using imagination may increase sensations.
Orgasm is the mind’s interpretation of physical sensations. You are able to orgasm, however it may be somewhat different from the orgasms you had before your spinal cord injury. It has been described as a warm sensation, either above or below your level of injury. The feeling might be the same as or stronger than it was before your injury. You can also orgasm by stimulating erogenous zones. Be creative, find and enjoy new areas of sensation.
Fertility is not affected by the SCI in women. You may not menstruate right away, but normal menstrual cycles will return in about 3 – 6 months. The duration and amount of flow should also return to normal.
You still need yearly gynecological exams and mammograms, as recommended for all women. It might be helpful to find a doctor who has worked with spinal cord injured women in the past. Also, call the doctor’s office to see if it is accessible. Ask if they have an alternating height exam table or other means to help you transfer onto the exam table.
1. Depo-Provera (“the shot”) – 99.75% effective.
- Pros: You get an injection every 3 months. It is easy and safe to use. Most recommended method of birth control.
- Cons: It has few side effects. Your periods can stop and there may be delay in return of fertility.
2. Contraceptive implant (Norplant) – 99.7% effective.
- Pros: It’s easy to use, safe, and effective. It provides long-term protection.
- Cons: It is surgically placed under the skin on arm, but can be a problem to remove.
3. Oral Contraceptives (“the pill”) – 99.7% effective. Progesterone only – No Estrogen
- Pros: It is very effective and easy to use. It may decrease bleeding, cramps, and length of your period, and decrease PMS.
- Cons: It can cause blood clots and other circulatory problems and has not been recommended for women with SCI; however, they have been used without any problems in these women
4. Contraceptive Patch – 99% effective.
- Pros: It’s very easy to use. Apply a new patch weekly.
- Cons: If it loosens, you may not know it due to lack of sensation. Other side effects are similar to the oral contraceptives, including the risk for blood clots.
5. Natural Family Planning (rhythm) – 87% effective – uses basal body temperature to indicate when ovulating.
- Pros: encourages partner’s cooperation.
- Cons: difficult to predict, requires record keeping, stress can affect cycle.
6. Diaphragm – 97% effective.
- Pros: It can contain menstrual flow.
- Cons: You need good hand coordination to insert. It may dislodge and you will be unaware of it due to poor or lack of sensation. Poor sensation limits accurate placement.
- Not recommended
7. Foams/Sponges and condom – 99% effective.
- Pros: It provides good protection against AIDS, sexually transmitted disease, and UTIs. It is reasonably priced, and can be inserted as part of foreplay.
- Cons: Accurate placement is difficult due to poor sensation. Also you need good hand coordination to insert. It can be messy and/or discourage oral sex. Condom may interfere with sensation.
8. IUD – 99% effective.
- Pros: It has few side effects for most women and is comfortable.
- Cons: Increased risk for PID (pelvic inflammatory disease), expensive, and difficult to insert. Not recommended for women with a history of cardiac disease or if taking anticoagulants. There is a possibility it can move and not be detected due to poor sensation. It may increase menstrual flow and spasticity.
- Not recommended
9. Sterilization – 99.9% effective.
- Pros: Provides freedom from contraception concerns.
- Cons: It is irreversible, there is a slight risk related to surgery.
Before getting pregnant, you should think about and discuss independence issues (mobility, ADLs) and financial issues (insurance coverage, child care provisions). During the pregnancy, you may need more help to do things that you had been able to do on your own (ADLs, transfers).
- Find a doctor who has experience caring for pregnant women with SCI, and who has an accessible exam room. Your medicines will need to be reviewed to see which ones you can keep taking
- SCI women should attend childbirth classes.
- Pregnancy can develop normally in a healthy SCI woman. There is no increase in the rates of miscarriages or fetal anomalies.
There is an increased chance of urinary tract infections (UTIs). Leaking and incontinence are problems due to increased pressure on the bladder. You will need to use some method of padding during pregnancy and after delivery. You may need to use a Foley catheter during the last trimester. Your bladder may never return to what it was before pregnancy due to lack of muscle support and may require surgery.
Constipation is a major problem. Iron taken for anemia worsens the problem. You will need to take more stool softeners and bulk laxatives. You may need to increase the frequency of your bowel program.
There are more pressure problems due to increased weight and swelling. It will be harder to perform weight shifts.
Transfers will become harder as the pregnancy goes along. This is due to balance problems, mainly in the third trimester. Strength and endurance will also decline during that time. So, you may need to think about using a power wheelchair instead of a manual one during the last trimester.
You will see more swelling in your feet. You may have dizziness with transfers if blood is pooling is your legs and feet. There is also a slightly higher chance for veins to become irritated.
Needs of the Baby
The growing baby needs calcium. Because of this, your need for calcium and your risk of osteoporosis are greater. Your doctor will likely recommend a multivitamin.
Autonomic dysreflexia (A.D.
The growing uterus pushing on the bowel or bladder may cause A.D. High blood pressure from A.D. may be mistaken for toxemia (high blood pressure, generalized swelling, and protein in urine). Symptoms of A.D. may lead to or be mistaken for premature labor since most doctors and nurses who deliver babies aren’t informed about A.D.
There is a high chance of early labor. We recommend weekly cervical checks as of the 32nd week. As soon as the cervix starts to dilate, bed rest is recommended.
Labor and Delivery
SCI women seem to know when they are in labor, even if they can’t feel the contractions. Contractions can be felt by palpating the abdomen.
Labor is different depending on the woman’s level of injury.
- T6 and above: 80% get autonomic dysreflexia, strong abdominal and leg spasms, have difficulty breathing, and have spasms in new areas. Contractions are absent.
- T6 – T10: Contractions are painless. Sweats, a tight belly, strong abdominal and leg spasms, difficulty breathing, and back or convulsive abdominal pains may occur.
- T11 and below: Normal labor.
The quality and duration of labor is comparable to able-bodied women. The contractions are stronger, more prolonged and more frequent, but duration of labor is shorter (average 6-8 hours).
There is a prolonged second stage of labor due to the woman’s inability to bear down. Women do not need to be able to push to deliver vaginally. The uterine contractions will push the baby out.
Autonomic Dysreflexia can occur with each contraction during labor and can best be treated with an epidural anesthesia. A Cesarean section may be required. Inducing labor in women with a SCI above T6 is not recommended due to the risk of A.D.
Breastfeeding is possible, regardless of the level of injury. Women injured above T6 may be only able to breastfeed for 6 weeks due to lack of nipple sensation (stimulation from sucking does not reach the brain to trigger prolactin production milk). Autonomic dysreflexia may occur with breastfeeding.
For more on pregnancy, please ask your doctor.
Important Numbers to Know
UWHC Rehabilitation Clinic (608) 263-6540
UWHC Inpatient Rehabilitation Unit: (608) 263-8388
The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited.
Last Updated: 01/28/2010
Copyright © 01/28/2010 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#5476
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