Sexuality and Scleroderma

Sexuality is much more than having sexual intercourse.  A person's sexuality is part of how they think about themselves and their desirability to others.  It encompasses the person that you think you are, your body, how you feel as a man or a woman, the way you dress, move, and speak, the way you act, and how you feel about other people.  In other words, sexuality is not only physiological, but also psychological, involving both the body and the mind.  Along with all of the other things that scleroderma may have taken away from you, your ability to have satisfying sex might seem to have been taken away too.  Let's be honest - tight skin, dry mouth, curled fingers, painful joints, heartburn, and fatigue can make it difficult to feel sexy.  However, there are ways for those living with scleroderma to have pleasurable sex despite the symptoms of the disease.

Pleasurable experiences of any kind help increase your quality of life.  Pleasure decreases pain, increases self-confidence, and increases optimism.  Satisfying sex can do even more by increasing exercise, endorphins, healthy sleep, and blood circulation to the extremities.  It is still possible for sex to be enjoyed comfortably if a couple takes advantage of the times when the person with scleroderma is feeling good, and by making whatever adaptations are necessary to relieve the physical aches and pains.  Communication between partners is essential.  It is important to convey sexual feelings whenever they do occur in order to maintain sexuality in a relationship.  Even if that sexuality is only expressed in affection, it is imperative that both partners express their love any way that they can, and realize that a decrease in sexual activity does not mean a decrease in love.

The physical symptoms that most affect sexual activity are the tight skin of the hands and face, pain, fatigue, dry mouth, and vaginal dryness.  For men with scleroderma, erection problems can occur due to the decreased blood flow to the penis and penile malformation due to tight skin.  The psychological issues include a decrease in sexual desire due to the emotional distress and mental preoccupation related to living with the disease, depression, changes in body image, and anxiety that sex will be painful.  The male partners of women with scleroderma can also be affected by the attitude of increased anxiety and retreat from sex for fear of causing pain and discomfort in the women they love. 

There are other physical changes, unrelated to the genitals, that can affect those suffering from scleroderma.  There can be stiffness of the muscles and joints which can limit sexual movement and position.  Stiff fingers can be clumsy and insensitive.  If the fingers are curled or bent, fondling and caressing may be very difficult.  Thin lips, small mouth, or protruding teeth can make kissing less pleasurable.  Self-consciousness due to changes in the texture of the skin and body contours can lower sexual desire.  A woman might feel unattractive and sexually undesirable, which can lower her sexual desire.  If her partner is worried about her, or depressed about her illness, he may be too preoccupied with her problems and may conceal his desire for sex.

There are many ways for those living with scleroderma to get their sensuality/sexuality back.  To address the psychological issues, resources such as couples therapists, counselors, and physicians specializing in sexual dysfunction can be explored.  Male erection problems, which can be due to psychological or physiological causes, can be treated by psychotherapy, testosterone therapy, or mechanical erection aids.  To reduce vaginal dryness for women with scleroderma, either estrogen replacement hormones in a pill form or an estrogen-containing vaginal cream can be used.  A warm bath can be used to help loosen up stiff joints.  Counselling can be effective way to deal with the depression, anger, fear, anxiety, isolation, and loneliness that a person living with scleroderma may be experiencing.  Again, communication between partners is the most important aspect of having a healthy sex life, with scleroderma or without.

It is also important to know that sometimes the very medications that are needed to treat the symptoms of scleroderma can get in the way of physical intimacy and pleasure.  Talking to your doctor about these side effects that may be affecting your sex drive or physical comfort may lead to possible remedies. 

The following are some ways that you can help ensure that you are physically comfortabel enough for sexual activity:

• Attitude is everything.  Intercourse is not the goal;  being together and feeling close is the goal.  The sexiest part of your body is your mind.
• Communication between you and your partner is key to experimenting with new ways of making love.
• Think about having intimacy for intimacy's sake.  A cuddle can be almost as loving as sexual intercourse.
• Get away for a couple of days so that you can reconnect and get away from everyday life.
• Take your medications at least 30 minutes before.  This can add to your comfort and reduce your worry about your physical symptoms.
• Take a warm bath, light candles, put on music.  In other words, set the mood.
• Use Replens or KY Jelly for moisture.
• Use helpful devices for sex the same way use devices to help you in other aspects of your life.
• Stretch the vagina with lubricant.

Sexuality can be affected by scleroderma in both men and women, however, it is not often spoken about because of the embarrassment.  A high quality of life includes sexuality and sensuality, as well as pain control, disability control and reduction of acute symptoms.  The same skills that you have learned to cope with scleroderma, such as gathering information and reaching out to support groups, can also be used to help you improve your sex life. 

I would like to acknowledge that the information for this posting came from the Raynaud's & Scleroderma Association (http://www.raynauds.org.uk/) and from Elaine Furst, R.N, MA, BSN (http://www.scleroderma.org/medical/sexuality/furst06_2.shtm).  Please visit these websites for further information.

Scleroderma Message Board

I wanted to take this opportunity to thank all of you who have read my posts.   I have been receiving wonderful comments and hearing stories of both triumph and tragedy from others who have also been touched by this disease.  I have also started a message board at http://www.boards2go.com/boards/board.cgi?&user=ljs0415
It would be great if more people would share their own personal experiences, or even ask questions.  Please  share this blog and message board with your friends.  And most importantly, if you or someone you know has suffered from Scleroderma, or you just empathize with those who have, please make a donation to the Scleroderma Foundation.

Thank you all for your support.