|  by
Elaine Furst, R.N., MA, BSN (originally published in
"Scleroderma Voice," 2006 #2)
Tight skin, dry mouth, curled
fingers, painful joints, heartburn, fatigue...this doesn’t
sound very sexy, does it?
Along with all the other things scleroderma may have
taken from you, your ability to have satisfying sex
might seem to be one of them. It’s easy
to see how physical discomfort can take the sexy out
of sexual relations, especially when pain and fatigue
are compounded by what you consider to be an unattractive
face and body due to your disease. Some of you might
even have even decided to give up sex up altogether.
This article will discuss ways to have a satisfying
physical relationship even though you may have some
or all of the symptoms listed above, or maybe a few
more in addition.
Some Definitions First
It is often thought that sexuality means having sexual
intercourse and that’s it. But sexuality is more
than that. Your sexuality is part of how you think of
yourself, especially regarding your desirability as
a person and your views on love.
Sexuality encompasses:
- the person you feel you are
- your body
- how you feel as a man or a woman
- the way you dress, move and speak
- the way you act
- how you feel about other people
In addition to ideas about sexuality, sensuality plays
an important part in a person’s sex life, although
it doesn’t only mean sexual pleasure. Sensuality
encompasses pleasure of all kinds, not only sexual pleasure.
Think about how wonderful it is to savor something delicious
or smell fresh flowers or luxuriate in a steamy bath.
These things are examples of sensual pleasure.
What Good Is Having Sex Anyway?
In general, having pleasurable experiences of all
kinds increases your quality of life. Think about the
last time you had fun and how good it felt: pain decreased,
self confidence went up, optimism increased, and so
forth. A satisfying sex life can do even more by increasing
exercise, increasing endorphins, increasing healthy
sleep, and increasing blood circulation to extremities.
 What
Causes Sexuality Problems in People with Scleroderma?
Not surprisingly, the physical symptoms that most
affect sexual functioning are the tight skin of the
hands and face, pain, fatigue, dry mouth, and vaginal
dryness. Men with scleroderma can have problems with
erection due to decreased blood flow to the penis and
penile malformation due to tight skin, both of which
can cause problems in sexual relationships.
Also not surprisingly, people with scleroderma who
have difficulty with how they look, difficulty in their
relationships due to disability and who are angry and
depressed over their illness have more trouble having
satisfying sexual relationships.
Finally, the symptoms of scleroderma can be difficult
in terms of physical discomfort and disability, but
sometimes the very medications that are needed to treat
those symptoms can get in the way of physical intimacy
and pleasure. The following medications chart on medications
gives a summary of the problems they some might cause. Be
sure to talk to your doctor about possible remedies
for the side effects that might be affecting your sex
drive or physical comfort.
With All the Physical Problems, How Can I Have a
Good Sex Life Again?
Let’s look at what a good sex life consists
of. Generally, you have to have a partner with whom
you can talk, have fun and who you trust with your thoughts
and feelings as well as your body. If you have this
person already, you have a great start on getting your
sensuality/sexuality back. If you don’t have this
person, it will take a bit of work on your part, but
many people with scleroderma have met their loved one
and gone on to have a lovely time together.
In the event you and your partner are having trouble
living with your scleroderma, including the changes
it’s caused in your sexuality, there are resources
for you to tap, such as couples therapists, counselors,
and physicians specializing in sexual dysfunction. Remember,
too, that your rheumatologist is concerned with your
quality of life as well as your medications or lab work.
Use these professionals to good advantage and get your
joy back.
Another aspect to a good sex life is physical comfort.
Here are some ways to make sure you’re physically
comfortable enough for physical intimacy:
- Attitude counts. One good attitude to have is that
intercourse is not the goal, being together and feeling
close
physically 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. Having a cuddle in front of the fire might lead
to intercourse but if it doesn’t, the cuddle
and chat can be almost as loving and lovely
- If you can, go away to a hotel for a day or two
so you can reconnect and get away from the everyday.
Bring candles and candle holders, have a good dinner,
prepare for your comfort as below. If intercourse
occurs, fine. If not, fine
- Take your medicine for pain, GERD, anti-inflammatory
at least 30 minutes before. This can add to the comfort
and reduce your worry about your physical symptoms
- Take a warm bath, light candles, put on music, get
a massage with oils, make up the bed with clean sheets
earlier in the day or do it together (this can be
a good stretching exercise), heat up the electric
blanket in advance
- Use Replens™, Astroglide™, or KY Jelly™
for moisture
- Use helpful devices for sex just as you use devices
to help you in other aspects of your life
- Stretch the vagina with plenty of lubricant. You
may also use other appliances for this. It’s
the same principle as stretching the mouth or fingers
with appliances
The Sexual Positions We’re Used to Are Painful
Now Because of My Tight Skin and Arthritis in my Joints.
What Do You Suggest?
There are resources (see the end of this article)
that can give you some options for positions that might
be more comfortable for you and require less strenuous
activity while providing intimacy.
Remember that any experimentation will require increased
communication between you and your partner in order
to determine what feels good and what doesn’t
work for the two of you.
Principles to Ponder
- A positive, can-do attitude and loving communication
make good things happen between people
- Living well with scleroderma requires a lot of adjustment,
both for the person with the disease as well as his
or her relationships with loved ones. This is
true of the sexual relationship as well
- A first-rate quality of life includes sexuality
and sensuality as well as pain control, disability
control and reduction of acute symptoms
- Good sex makes people feel good about themselves
in addition to increasing physical relaxation, reduction
of pain, relief of depression and fostering a sense
of enjoyment
- Use the skills you’ve developed to cope with
scleroderma, such as information gathering and support
groups, to help you improve your sex life
Some Resources
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