MS and Intimacy
by Tanya Radford
What is intimacy?
Is it sex, love, touching, honesty, commitment, acceptance? Or is it vulnerability,
fear of rejection, sexual difficulties, shame? For many people with MS,
intimacy is all of these thingsthe good and the bad.
Confronting the challenges
of MS draws many couples closer together. Talking about problems and developing
solutions can deepen both partners sense of intimacy. But MS can
also create barriers. People often report that their relationships suffer
as a consequence of MS. Many people with or without MS dont talk
easily about their sexualityeither the positive aspects or the anxieties
associated with it.
Although study results
vary somewhat, it seems clear that people with MS do experience more sexual
problems than the general population. MS can affect sexuality both directly
and indirectly. This booklet looks at the effects of the problems and outlines
how they can be managed, solved, or minimized.
Many of the suggestions
are useful even if MS is not the source of sexual problems. Difficulty
with sex is quite common among humans in general. Happily, there are many
sources of help and support. The primary care physician can usually start
the process of identifying the source of problems and offer both medical
and non-medical treatment options and/or referrals. But often, the person
with MS has to bring up the subject.
An easy way to begin
is by requesting regular checkups related to sexual health: For women,
annual breast and pelvic exams, a pap smear, and, after age 40, mammograms;
for men, testicular cancer screening, prostate exams, and, after 40, PSA
tests. For both sexes, birth control and HIV prevention advice. These
requests not only protect health, theyll remind your health-care
provider that you are a sexual being, despite the MS diagnosis. You may
then find it easier to report personal symptoms and ask questions.
Intimacy and sexuality
are important components of a healthy and contented life. Sexuality does
not have to disappear from the lives of couples when one partner has MS.
Instead, partners can find satisfying approaches to sexual intimacy that
overcome the barriers.
Often the biggest
problem is the inability to discuss sex and intimacy with ones partner.
In many ways, a discussion of personal sexual problems is still taboo
in our society, despite a popular culture that seems to be steeped in
sex. Not only is the subject embarrassing, but in many cases we just dont
have the language to describe our feelings and experiences.
Writing it down
It can help to start
by putting pen to paper. What physical symptoms interfere with your intimate
relations? Which of these symptoms is the greatest barrier? What feelings
and as-sociations do you have when you think about MS and your love life?
Writing ideas down may help put the problems into language and start the
difficult process of communicating. It may also help to clarify where
the challenges lie, which is the first step toward a solution.
with your partner
Talk is the main way
that we come to feel close to another person, perhaps because of how very
difficult it is to talk to someone about personal things. We share our
life stories, goals, fears, and dreams only with special people.
When MS problems
are in the picture, avoiding talk can easily lead to avoiding sex. Sen-sory
changes may make things that used to bring pleasure feel painful or uncomfortable.
Telling your partner what feels good and what doesnt, becomes crucial
to intimate relations when MS changes the body and the mind. Its
important to find out what your partner wants, and let him or her know
what you want.
Confiding in your
partner actually deepens intimacy and may go a long way toward resolving
fears. For example, one common anxiety among people with MS is fear or
shame about bladder or bowel accidents. Giving up sexual activity is not
a solution to this. Discussing the problem will reduce anxiety between
loving partners. Open communication with health-care professionals will
produce some solutions. Bladder and bowel problems can usually be managed
through manipulation of medication and establishing regular eating and
toileting schedules. With good communication, a little urine wont
destroy a rewarding sex life. Con-cealing the problem and the anxieties
associ-ated with it might.
The person with MS
is not the only one who needs to talk about sexual feelings and anxieties.
The well partners experience is also affected by the MS. Communicating
can help well partners avoid guilt, grief, and resentment.
can undermine sexuality in subtle ways. People with MS who have developed
difficulties with short-term memory or concentration, may drift off during
sexual activities in ways that can be disheartening to their partner.
Indeed, the partner may be more aware of this MS symptom than the person
It requires love
and patience to bring this out in the open and to seek the needed psychological
and medical treatment.
Talking to your
may or may not include sexuality in patient evaluation and treatment,
and they may or may not be aware of all the resources available for help.
For this reason, its a good idea to learn as much as you can about
sexual issues and to be proactive with your health-care team.
If you have symptoms
that hamper sexual activity, tell your health-care team. Or write out
a list that you can hand over to your doctor or nurse. Many sexual problems
associated with MS can be medically managed. You can encourage your doctor
to focus on ways to minimize the effects of MS and MS treatments on your
sex life if you ask.
Sometimes the well
partners pull away from sexual activity because they worry about hurting
the person with MS. In this situation, well partners should have an open
discussion with the health-care team and get information about the safety
of various sexual activities.
People with a gay
sexual orientation sometimes have problems communicating with health-care
professionals. You need to take action if you find that your health-care
provider is uncomfortable, disrespectful, or dismissive of your sexuality.
This attitude affects your total health care. You can and should seek
more supportive professionals. Ask your Society chapter for referrals.
Community gay rights organizations may also be able to offer some assistance.
more about how MS can affect sexuality may help with communication. Know-ledge
often makes it easier to name and discuss particular problems that you
or your partner are experiencing. The Review section of this booklet (page
24) is a good starting place. Your Society chapter may be able to recommend
additional reading that will help you learn more about MS and sexuality.
The chapter staff can certainly help keep you informed about new treatments
no single site for sexual response in the human nervous system. The nerves
that orchestrate it are spread throughout the brain and spinal cord. This
wide dissemination means that there are many pathways where MS lesions
(scarring, inflammation, or other damage) might disrupt nerve messages
for sexual activities or feelings. But it also means that the central
nervous system can compensate by using other pathways if the usual pathway
sexual function in MS
a comprehensive picture may require medical and neurological records.
Your primary-care provider may consult with or refer you to other specialists,
possibly a psychologist and/or a urologist.
other mental-health professionals help people clarify and discuss intimate
issues. Counseling often helps couples gain perspective on their attitudes
and behaviors. Training in communication may be offered, to teach couples
ways to talk more easily with each other and with the medical team. National
MS Society chapters can provide referrals to mental-health professionals
who have experience with MS.
and treat both bladder and erectile problems. Bladder problems can interfere
with sexual activity for both men and women. These are manageable problems
that shouldnt be neglected. Urologists may also perform the medical
tests to evaluate sexual function in men. These might include penile doppler
sonography, which looks at blood flow in the penis, and nocturnal penile
tumescence, which determines if the usual nocturnal erections are taking
The most common problems
experienced by women are loss of sex drive, uncomfortable sensory changes
in the genitals, vaginal dryness, and loss of or difficulty reaching orgasm.
Loss of sex drive
there is no proven medical treatment for loss of sex drive (or libido)
in women. Sometimes the sex drive simply returns. Other times the loss
or lessening of intensity may be permanent. The sex drive in women is
vulnerable on many fronts. Demyelination (or damage to the myelin that
protects nerve fibers), fatigue, anxiety, or depression can all cause
loss of desire.
However, loss of
sexual desire does not make a
satisfying sex life impossible for women. Desire is not a necessary precondition.
Women can experience sexual pleasure even in the absence of a powerful
In the movies, desire
is always sparked in both
partners at once. In real life, one partner produces sexual interest in
the other through playteasing, flirting, and foreplay. Many couples
discover that the loss of intense sex drive simply means more flirting
like numbness, that sometimes occur in the vaginal area can make intercourse
uncomfortable or interfere with orgasm. Medications such as phenytoin
and carbamazepine may dampen sensory discomfort. Gently rubbing the genital
area with a bag of frozen peas can also reduce discomfort.
to the genital area can help overcome numbness. In some cases, oral or
manual stimulation of the clitoris will be enough to enable a woman to
If this is not sufficient,
vibrators and other sex toys may provide even greater stimulation. There
are many kinds of vibrators available at adult novelty stores and through
mail-order catalogs. Some couples may enjoy the small egg-shaped vibrators
made to be worn during intercourse. There is also a device called EROS-CTDconsisting
of a soft cup to be placed over the clitoris and a palm-sized vacuum pump
that draws blood into this tissue, increasing arousal.
lubrication makes intercourse un-comfortable, even chafing. Water-soluble
lubricants are an easy solution. Over-the-counter brands such as KY Liquid
and Astroglide are widely available. Many people find liquids last longer
and work more effectively than jellies. They can fail when they are used
too sparingly. (Dont skimpuse lots!) Avoid oil-based lubricants
like petroleum jelly because they can trap bacteria and cause infections.
can strengthen the muscles in the vagina, which may enhance sensation
and sexual response. To locate these muscles, try to stop the flow of
urine as you urinate. Once the muscle is located, contract it a couple
of dozen times a day, independent of urination. Except for the test, dont
contract during urination
as this may cause a pattern of incomplete emptying, leading to infection.
The most common problems
experienced by men are difficulty or inability to get or hold an erection,
decreased genital sensation, rapid ejaculation, and difficulty or inability
In some cases it
may be hard to tell what is causing the problem. Demyelination (or loss
of the protective myelin layer on nerve fibers) may directly affect erectile
function. Medica-tions may also be factors. Stress and anxiety produced
by living with MS may contribute to or even be the primary cause of erectile
dysfunction. Your physician will try to clarify the source of the problem
in order to choose the most appropriate solution. Understanding the mechanics
may help you and your partner.
How do erections
In the presence
of sexual stimulation, nerves in the spongy tissue of the penis release
the chemical nitric oxide, which stimulates production of something called
cyclic GMP. The release of cyclic GMP relaxes the smooth muscle in the
penis, compressing the veins. When this happens, blood flows in but cannot
get back out, and an erection occurs.
The fear of having
difficulty getting or keeping an erection can be so overwhelming that
it causes some men to lose interest in sex entirely.
This anxiety may even be the sole source of the problem.
Cialis, Levitra, Alprostadil, and topical medications are currently used
to treat erectile problems. Talk to your doctor about them, and ask for
regular updates on new medications and other approaches.
and Cialis produce a higher cyclic GMP concentration in the penis and
enhance erections by creating more compression of the veins by smooth
muscle tissue. Recent research indicates that Viagra is effective
in about 50% of men with MS.
by the FDA in 2003, and Cialis, also approved by the FDA in 2003, both
work by targeting an enzyme important for keeping blood in the penis during
erections. Viagra, Cialis, and Levitra are all taken in pill form. Many
physicians see them as interchangeable but may recommend trying another
if one of them fails to work well. Individual responses vary.
All three drugs help
maintain an erection but do not produce one. Sexual stimulation is needed
for that. No men with MS were in the trials that led to the approvals,
although Viagra has been studied in an MS population.
Before taking any
one of these drugs, its important to take precautions against possible
drug interactions and to discuss side effects with a knowledgeable physician.
Men who have heart or blood pressure conditions or who take nitrate-based
medications may be especially at risk for problems.
Other options include
self-injection of Alpro-stadil into the spongy tissue of the penis. This
relatively painless injection produces an erection. The needle is very
small, and the satisfaction with it is generally excellent.
Devices can also
tube and band device can be an effective alternative to medications. It
consists of a plastic tube with a pump and band for the base of the penis.
The tube fits over the penis. The hand pump produces vacuum pressure,
and the band constricts the veins. This makes the penis fill up with blood,
producing an erection. The tube is then removed. Because of its effectiveness
and availability, the vacuum tube and band is widely used by men with
These devices can
be purchased in specialty shops and through mail-order and Internet catalogs,
some of which are listed in the Resource section of this booklet. Catalogs
and specialty stores also sell rubber rings meant to be worn at the base
of the penis. These rings reduce blood flow out of the penis and can help
to maintain erections.
It is important to
get instruction on using such devices from a urologist or other medical
professional to prevent damage to the penis. The vacuum tube and band
may also be prescribed by physicians or urologists.
changes in the genital area may impair pleasure or interfere with ejaculation.
Manual and/or oral stimulation may provide enough extra sensory input
for erection and orgasm.
too rapid ejaculation may occur because MS-related nerve damage interferes
or reduces control. Additionally, anxiety about rapid ejaculation can
actually trigger it. Some men are able to gain greater control by learning
(through practice) when they are approaching the point of inevitability
and then stopping intercourse long enough to regain control. This process
is described in some of the resources listed at the back of the booklet.
People tend to think
of orgasm as the ultimate goal of sex. But is this true? There may be
times when orgasm is impossible. Does this make sexual behavior pointless?
The temporary or even permanent loss of orgasm in women or in men does
not invalidate their need for intimacy and sexuality. Physical intimacy
produces emotional intimacy that deeply affects peoples physical
and emotional well-being.
In other words, sex
makes people feel good, even when it doesnt lead to orgasm. Making
love does not necessarily mean having intercourse. And having intercourse
is not the only way to experience sexual pleasure.
Despite the tremendous
emphasis on orgasm and ejaculation as the goals of sexual
activity, most people experience great physical and mental arousal from
the activities we call foreplay. This is an unfortunate name, because
it assumes that these activities are a prelude to real sex
and not a satisfying form of sexual gratification in themselves.
People who hold themselves
to a standard of performance that must culminate in orgasm are going to
find less satisfaction than people who are willing to explore and experiment
with different sexual activities. This is true for everyone, not just
people who live with MS.
women with MS may want to redefine sexuality for themselves. This may
mean putting more emphasis on forms of touching that provide warmth: cuddling,
caressing, and massage, for example. Some may need to ex-plore sexual
activities that require less mobility. Oral and manual stimulation of
the clito-ris, penis, and many other parts of the female and male body
can be highly satisfying alternatives to traditional intercourse.
may want to revive those old juvenile activities, like making
out. Kissing is one of those sexual activities that adults tend
to rush through in pursuit of an orgasm.
is an area heavily colored by cultural values and expectations. Some religious
groups consider it unacceptable. If that is true for you, please skip
the next paragraph.
think of masturbation as juvenile, or as a substitute for
sex. The fact is, most sex experts today say that solo sexual activities
help people to redefine and renegotiate their sexuality. If sex is not
just orgasm, then sex is not just something that only happens between
two people. Self-stimulation reminds us that we need not be dependent
on another person for pleasure and release. In cases where the effects
of MS make solo sexuality difficult, the strain and discomfort may be
reduced by experimenting with vibrators and other sexual aids.
THE MEDICAL PROBLEMSA CHECKLIST
Many sexual problems
produced by MS symptoms or MS treatments can be managed with the help
of your medical team.
- Pain can be controlled
- Spasticity can
be reduced with medication, cold packs, and stretching or massage.
- Side effects may
be minimized by taking medications at a different time of day or by
changing the timing of sexual activity. You might also consult your
doctor about switching to medications with fewer sexual side effects.
- Fatigue can be
alleviated through energy conservation and, in some cases, with medication.
Making love at times when the partner with MS is most energetic (usually
the morning) will also help.
- Alternative sexual
positioning can help with both spasticity and weakness. Using pillows
for support or trying the side positions can relieve discomfort.
- Catheters can
be secured during sex. Your doctor or nurse can show you the best way.
How does one shift
from being a caregiver to a lover? In relationships where a partner provides
a lot of caregiving this can be difficult. It is important for the well
partner to maintain some regular personal time away from caregiving duties
because that helps prevent feelings of resentment. It may also be important
for the couple to create new rituals and new sexual signals that separate
caregiving activities from sex and romance. Talking together about the
old signals and rituals may help a couple begin creating a new path.
Living with a chronic
illness makes people very aware of their bodiesthe ways it works
and the ways it doesnt. Often this intense awareness makes the body
seem strange and unfamiliar. And certain MS symptoms make the body respond
very differently than it once did. Making peace with this new condition
means taking the time to investigate and explore it.
is a simple exercise in self-exploration. The idea is to map out personal
sensations by touching yourself from head to toe. What makes your body
feel pleasure? Discomfort?
Relaxation? Mapping will help identify areas of change, numbness, and
discomfort. It will also help locate areas and ways of touching them that
For this exercise
to be successful, it is important to adopt an attitude of open exploration.
In a comfortable, secure setting, spend 15 minutes gently touching all
the parts of your body that you can reach. Repeat the exercise regularlyseveral
times a week. Linger on the pleasure areas, but dont try to achieve
an orgasm. The purpose of body mapping is to get to know your body. Pursuit
of an orgasm may interfere with this exploration.
More advanced body
mapping exercises include both partners. Exploring each other through
touch can help deepen intimacy and enhance sexuality. In some cases, this
touching may make verbal com-munication between partners easier.
has a lot to do with feeling sexy. A person can decide to feel good. To
start, take care of your body through good healthy food, relaxation, and
enjoyable exercise. Make time to do things that are special. Spend some
time on your clothing and hair. Dress has a huge impact on self image.
Select clothing that makes you feel comfortable and attractive.
are sexually exciting to you? What things are turn-offs? What thoughts
interfere with or suppress your sexuality?
an important part of main-taining sexuality in your life, especially if
MS has dampened desire. Thinking more positively will help to restore
activities take on an aura of the erotic, thats romance. Find ways
to transform the everyday into the romantic, for there, intimacy thrives.
Dine by firelight, take a bath by candlelight, watch the sun set or the
moon rise, hold hands, flirt.
Most important of
all, dont give up the pleasures of physical and emotional intimacy.
Do give up the niggling worry that sex is not a fit subject for conversation.
Talk about it with your lover and talk about it with your doctors and
nurses. Its worth it.
REVIEW OF THE SEXUAL EFFECTS
begins in the central nervous system, as the brain sends messages to the
sexual organs along nerves running through the spinal cord. MS-related
damage to these nerve fibers can directly impair sexual feelings or sexual
response. And, just as with other aspects of MS, sexual problems can arise
at any time, without any clear cause.
The primary sexual
effects of MS include:
- Decreased or absent
- Altered genital
sensations such as numbness, pain, or hypersensitivity.
- Decreased vaginal
- Difficulty or
inability to get an erection.
- Decreased vaginal
lubrication and clitoral engorgement.
- Difficulty or
inability to ejaculate.
- Decreased frequency
and/or intensity of orgasms.
All of these are
changes that can occur as a direct result of demyelination in the spinal
cord or brain.
effects arise as a consequence of MS-related physical changes or MS treatments.
Secondary problems include fatigue, spasticity, bladder or bowel problems,
sensory changes, decreased non-genital muscle tone, cognitive impairments,
tremor, and pain.
- Fatigue, a very
common MS symptom, can suppress desire.
- Spasticity can
interfere with sexual positioning or cause pain.
- Bladder and bowel
problems are closely related with sexual difficulties because the nerve
pathways are shared or nearby. Bladder and bowel disturbance also create
fears that other symptoms do not. The thought of having a bladder or
bowel accident during sex can stifle interest.
sensory changes can make physical contact, such as caressing, uncomfortable.
Because physical contact is such an important part of intimate communication
and simple pleasure, the loss can be devastating.
- Decreased non-genital
muscle tone. Muscle tension in the body helps build sexual excitement
and contributes to orgasm in both men and women. The decrease in muscle
tone caused by MS can interfere with both.
- Cognitive impairments,
such as changes in attention and concentration, can also interfere with
the buildup and progression of sexual excitement and feeling. Changes
in attention or concentration can disrupt the emotional and behavioral
interactions of sexual activity, producing a sudden loss of interest.
- Tremor, such as
intention tremor, can in-terfere with touch and communication. Tremors
in the hands or body can interfere with physical and emotional communication
- Pain commonly
occurs with MS and can interfere with both intimacy and sexuality.
- Side effects of
various medications can interfere with sex drive or function.
Managing indwelling catheters can pose additional difficulties.
effects result from psychological, social, and cultural issues. In many
ways, they raise the most difficult barriers to contentment in intimate
and sexual relationships. And they can affect both the person with MS
and his or her partner. Tertiary effects include depression, demoralization,
and guilt; family and social role changes or role conflict; performance
anxiety; and changes in self-image.
- Grief, demoralization,
anxiety, and depression frequently accompany MS. These emotions affect
both partners. They may cause feelings of isolation, interfere with
desire, and lead both partners to stop thinking sexually.
- MS may change
a persons roles in work, in running a household, in parenting,
in the activities of daily living. Sometimes these changes make the
person with MS feel childlike and dependent, unable to be a loving partner.
These changes can be difficult for well partners, too. Caregiving activities
can leave the well partner feeling more like a caretaker than a sexual
- Changes in body
image can affect both the person with MS and the well partner. Changes
in physical appearance may damage peoples image of themselves
or their partner as a sexual being. Our society
doesnt offer up many images of sexiness
that include a cane or wheelchair.
- Fatigue, stress,
and lack of personal time also affect self image. It is hard to feel
sexy when you are tired and anxious. And it can be difficult to make
time to take care of yourself and your body.
- Cultural values
and expectations get in the way of intimacy and sexuality. Many ideas
about proper or adult sexuality prevent people
from exploring new ways of giving and receiving pleasure. Our society
puts great emphasis on ejaculation and orgasm as the sources of sexual
satisfaction. This goal-oriented approach to sex may make the pursuit
of satisfaction a frustrating experience.
- Clearly living
well with MSand establishing or maintaining healthy intimate relationsrequires
a great deal from everyone involved. The Society wants to be an ally,
helping people to learn for themselves and to find trustworthy helpfrom
urologists, psychologists, and other health-care specialists to self-help
groups and educational programs. You can connect to the chapter nearest
you by dialing 1-800-FIGHT-MS. The Resources following may also be of
Fact Book by Richard Lechtenberg, M.D., Second Edition, 1995. $27.95.
Write: F.A. Davis Company, 1915 Arch Street, Philadelphia, PA 19103. Tel:
800-323-3555 for credit card orders. Web site: www.fadavis.com.
A Self-Care Guide to Wellness edited by Nancy Holland, M.S.C.N., Ed.D.,
and June Halper, M.S.N., R.N. Paralyzed Veterans of America, Inc., 2004.
$19.95. Tel: 888-860-7244.
Managing the Symptoms
of Multiple Sclerosis,
4th Edition, by Randall T. Schapiro, M.D., Demos Publications, 2003. $19.95.
Write: Demos Publications, 386 Park Avenue South, Suite 201, New York,
NY 10016. Tel: 800-532-8663. Web site: www.demosmedpub.com.
The Questions You
HaveThe Answers You Need
by Rosalind C. Kalb, Ph.D., Third Edition, 2004. $39.95. Write: Demos
Publications, 386 Park Avenue South, Suite 201, New York, NY 10016. Tel:
800-532-8663. Web site: www.demosmedpub.com.
A Guide to Love, Sex, and Relationships for People with Disabilities
by Ken Kroll and Erica Levy Klein, No Limits Communications, 2001. $15.95.
Can be ordered from Amazon.com.
The Joy of Solo
Sex by Dr. Harold Litten, Factor Press, Paperback, 1996. $12.95. Focuses
mainly on men. Can be ordered online or at your local bookstore.
Sex for One: The
Joy of Self Loving by Betty Dodson, Random House, 1995. $14.00. Focuses
mainly on women. Can be ordered online or at your local bookstore.
and Education Council of the United States (SIECUS) provides a bibliography
of print and audiovisual materials related to sexuality and disability
for $3.00 Write: SIECUS, 130 West 42nd Street, Suite 350, New York, NY
10036-7802. Tel: 212-819-9770. The bibliography is also available free
on the Web at www.siecus.org.
of Sex Education Counselors and Therapists (AASECT) provides a list
of certified sex therapists and counselors in your area. Send a self-addressed
stamped envelope to: AASECT, PO Box 1960, Ashland, VA 23005-1960. Tel:
804-752-0026. Web site: www.aasect.org.
Group. A catalog of sexual aids, books, resources, and information.
$4.00 each. Write: 5375 Procyon Street, Suite 102, Las Vegas, NV 89118.
provides a mail-order and Internet catalog of sexual aids, books and videos.
To get a catalog, write 938 Howard Street, Suite 101, San Francisco, CA
94103. Tel: 800-289-8423.
The Sexual Health Networks Web page has information on sexuality
for those with disabilities and illnesses. It also provides links to other
resources and offers live broadcasts. There is an archive of mainly educational
books and videos.
The Sinclair Intimacy Institute has a catalog of adult sex education videos.