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Sexuality and Scleroderma
(05/04/2004) by Unknown
By
Chris Saad, PhD and Andy Behrendt, PhD,
adapted from:
Scleroderma Symptoms and Their Impact on Sexuality
Ameliorating Negative Effects on Sexuality
Relationships
Scleroderma is an autoimmune syndrome with many
symptoms that can have a negative impact on sexual
functioning. With appropriate intervention, if necessary,
the person with scleroderma can continue to have a healthy
and satisfying sexual life.
The purpose of this article is to make the available medical
information about scleroderma's effects on sexuality.
Scleroderma Symptoms and Their Impact on Sexuality
Persons with scleroderma may experience a variety of
physical symptoms that can potentially affect their
sexuality. Not every person with
scleroderma experiences every symptom.
Scleroderma literally means "hard skin" (Black, 1991). The
skin of the person with scleroderma becomes hard and
tight, causing the person to feel as though the skin is "two
sizes too small." Skin changes can be limited, or they can
affect the entire body (Silman, 1992). Skin tightness around
the vaginal introitus can make penetration difficult, and
tight skin on hips, thighs, and buttocks can limit movement
and thus curtail sexual enjoyment (Bhadauria et al., 1995).
The facial skin of a person with scleroderma may tighten,
causing the face to be less motile and have a changed
appearance. The mouth can become smaller, appear
pinched, and be difficult to open, which may cause
emotional distress (Donohoe, 1992). The shrinking of the
mouth may make pursing the lips for kissing difficult and
can cause problems for those wishing to engage in
cunnilingus or fellatio.
Some people with scleroderma have calcinosis, or the
accumulation of calcium salts near the surface of the skin. If
these calcium deposits protrude through the skin, they are
sometimes painful when touched. Telangiectasias, small
capillaries that become visible through the skin of the face
and hands, are also typical. This can be particularly
problematic for women, as society places a high emphasis
on women's physical appearance. Women with skin
changes on their faces or elsewhere frequently feel
apologetic for a less than "perfect" body in a society in
which physical appearance measures a woman's worth
(Cole, 1988).
Many people with scleroderma experience joint pain,
stiffness, and muscle weakness that can curtail sexual
enjoyment and can limit ability to masturbate (Bhadauria et
al., 1995; McCormick, 1994). Often a partner is afraid to
touch the person with scleroderma because of fear of
causing pain or discomfort (Redfern, 1991). Because pain is
not visible, the partner might view the person's reluctance
to engage in sexual activity as withholding or as a rebuff
(Rolland, 1994). For example, the person with scleroderma
might refuse penetration because she is experiencing
dyspareunia, but her partner may see the refusal as a
personal rejection.
The fingers of a person with scleroderma typically become
fixed in a bent position. Masturbating oneself or one's
partner(s) and using certain contraceptives such as
diaphragms, sponges, cervical caps, condoms, or foam may
be difficult for people whose hands are deformed
(Bhadauria et al., 1995; Cole, 1988; Katzin, 1990).
About 70% of people with scleroderma experience
esophageal dysfunction. This problem causes heartburn
when supine (Donohoe, 1992) and can cause difficulty
swallowing (Stainforth & Goodfield, 1994). Scleroderma
may damage the intestines, resulting in diarrhea,
constipation, incontinence, weight loss, nausea, pain,
and/or bloating (Bhadauria et al., 1995; Toskes, 1991).
Treatments include special diets, antibiotics, and other
medications (Toskes, 1991). People experiencing nausea
and/or pain may not desire intercourse, although they
might wish to engage in other sexual activity such as
touching and holding.
The most common symptom of scleroderma is Raynaud's
phenomenon, a condition in which blood vessels constrict
in response to the cold, physical or emotional stress,
cigarette smoke, or caffeine ingestion. Raynaud's
phenomenon is most frequently found in the fingers and
toes, but it can affect other parts of the body as well. Upon
exposure to cold or stress, the extremity becomes white as
blood circulation to the area is diminished. Reduced blood
circulation causes diminished oxygen flow, and the area
turns blue. When blood returns to the area, it becomes very
red. Finally, the region returns to its usual color. During a
Raynaud's episode, the person feels pain, tingling, a
burning sensation, or numbness (Stephenson, 1992).
Raynaud's can make it uncomfortable for the person with
scleroderma to undress. In persons with severe Raynaud's
phenomenon, small, painful ulcers can form on the skin on
the hands (Stephenson, 1992). These ulcers can be very
painful if touched.
The skin, blood vessels, and esophagus are the organs most
frequently damaged by scleroderma, followed by the lungs
(Earle, 1993; Silver & Miller, 1990). Scleroderma lung
involvement can cause interstitial pulmonary fibrosis or
pulmonary hypertension (Silver & Miller, 1990; Steen,
1990). Eighty-six percent of people with diffuse scleroderma
have interstitial pulmonary fibrosis, and 25% have
significant pulmonary hypertension (Anvari et al., 1992).
Symptoms include shortness of breath, a decreased
tolerance for exercise, a persistent cough, palpitations, and
swollen feet (Earle, 1993; Silver & Miller, 1990). Lung
impairment is the leading cause of death in scleroderma
(Smiley, 1992). Some sexual behaviors could be difficult for
someone with severe lung involvement.
Most people with scleroderma have mild cardiac
abnormalities. Often the person is asymptomatic and
therefore unaware of cardiac irregularities without specific
medical diagnosis (Anvari et al., 1992). These mild cardiac
abnormalities most likely will not inhibit sexual expression
or other activities in any way.
Renal involvement in scleroderma can range from mild to
severe. Mild renal involvement is usually treated with
drugs; symptoms include proteinuria and high blood
pressure. The severe condition is called scleroderma renal
crisis. It is life threatening and requires dialysis (Black, 1990;
Donohoe, 1992; Satoh et al., 1994). Studies show that about
50% of people with diffuse scleroderma have mild renal
involvement, and between 3% and 10% have scleroderma
renal crisis (Black, 1990; Donohoe, 1992). Symptoms of
scleroderma renal crisis include high blood pressure,
rapidly progressive renal insufficiency, and proteinuria. The
person urinates less frequently or stops urinating altogether.
Sexual symptoms of renal failure can include decreased
sexual desire, diminished arousal, and retarded orgasm
(Kaplan, 1979; McCormick, 1994). Men may experience
arteriosclerotic changes in the penis (Kaplan, 1979).
Women with renal disease often experience amenorrhea.
Many people with scleroderma have Sjogren's syndrome, a
condition characterized by dry eyes and mouth. According
to Redfern (1991), dry vagina is another common but rarely
mentioned result of Sjogren's syndrome. Vaginal
penetration can be extremely painful for a woman whose
vagina does not lubricate.
Women with scleroderma often experience specific sexual
symptoms. Fifty-six percent of the women participating in
Bhadauria et al.'s (1995) study experienced dyspareunia
(painful intercourse) and 57% experienced decreased desire
for sexual intercourse. Bhadauria et al. did not ask their
participants about desire for sexual behaviors other than
intercourse. More research needs to be conducted to
address this question. One third of the women experienced
fewer or less intense orgasms. The decrease in number and
intensity of orgasms could be a result of the vascular
changes that occur in scleroderma (Bhadauria et al., 1995).
Some men with scleroderma experience changes in their
penis (Ordi et al., 1990; Simeon et al., 1994). Erectile
dysfunction is experienced by one third to one half of men
with scleroderma (Lally & Jimenez, 1990; Simeon et al.,
1994). This problem is caused by vascular changes which
limit blood flow to the penis. Peyronie's disease, a disorder
involving fibrosis of the corpora cavernosa, is another, less
common, cause of erectile dysfunction in scleroderma (Ordi
et al., 1990; Simeon et al, 1994). According to Johnson
(1981), who had scleroderma, another potential problem
for men with scleroderma is ejaculatory dysfunction.
Ameliorating Negative Effects on Sexuality
Although most people with scleroderma work out their
own solutions to the sexual difficulties that can be caused
by scleroderma, some may need or desire sex therapy.
Women have intercourse much less frequently after the
onset of scleroderma, and they are significantly less sexually
satisfied one year after onset of scleroderma than they were
one year before the condition's onset (Bhadauria et al.,
1995). According to Annon (1976), most sex therapy clients
need only permission, limited information, and specific
suggestions to alleviate the majority of sexual problems.
Only infrequently do clients require intensive therapy.
Following Annon's model, we provide information about
scleroderma and suggestions for engaging in sexual activity
to help those with scleroderma remain sexually active.
There are many ways a person with scleroderma can
ensure comfort during sexual activity. It is helpful for
someone with Raynaud's phenomenon to adjust room
temperature before disrobing. Remaining partially clothed
or using additional blankets can help make sexual activity
more comfortable. It is important to keep the entire body
warm, as a Raynaud's episode can occur if any part of the
body is chilled (Stephenson, 1992).
Pain can be alleviated by analgesics. Advance scheduling
of sexual activity can help ensure that it proceeds with
minimum discomfort. A person can plan to have sexual
activity when rested and least fatigued and when
anti-inflammatory drugs are working. A warm bath or
shower prior to sexual activity often eases joint stiffness.
Range of motion exercises before sex may help, but the
person must stop exercising before reaching the point of
pain or fatigue. Extra pillows placed underneath painful
joints often facilitate a minimum of stress (Katzin, 1990;
Schover, 1989). The couple can experiment with sexual
positions to find those that are the most comfortable
(Bhadauria et al., 1995; Mooradian, 1991).
Sexual activity can be extremely painful for a woman
whose vagina does not lubricate because of Sjogren's
syndrome. This problem is easily solved with use of a
water-based lubricant (Redfern, 1991). Use of a lubricant
can also be helpful for women with dyspareunia
(Bhadauria et al., 1995).
Because reclining after meals causes painful heartburn, the
person should not eat immediately before sexual activity.
Many people with scleroderma minimize nighttime
heartburn by placing the bed at an incline by elevating the
head of the bed. Eating small meals is also helpful
(Bhadauria et al., 1995).
Communication is essential because partners need to be
told what is pleasurable, what is painful, and when the
person with scleroderma does or does not want sex
(Rolland, 1994). Persons with painful calcium deposits
need to alert partner(s) not to touch them. Similarly, a
person who has finger ulcers must protect them and let
partner(s) know that they are painful when touched.
Some creativity is required to solve the problems caused
by hand deformity (McCormick, 1994). Lessing (1984)
suggested that the person with the deformity "introduce"
the deformed hands to the partner(s), inviting the
partner(s) to touch them and explaining what kind of touch
feels good. Thumbs, wrists, or backs of hands can be used
to touch oneself or one's partner(s). Use of auxiliary
materials such as vibrators, dildos, creams, and lotions
often enhance sexual pleasure. Communication with the
partner is essential if the hands of the person with
scleroderma have become deformed. Partners can help
insert diaphragms or unroll condoms onto the erect penis. If
pregnancy prevention is a concern but disease transmission
is not an issue, use of alternative contraceptive methods
such as the Pill, Norplant, the intrauterine device, or Depo
Provera may be feasible (Katzin, 1990; Van Vollenhoven &
McGuire, 1994). If disease prevention is a concern, it is
essential that persons with limited manual dexterity ask
sexual partners to handle condoms and dental dams if they
themselves cannot manage.
Medications can be of specific concern in sexuality and
chronic illness. Sometimes Raynaud's phenomenon is
treated with anti-hypertensive medications to improve
blood circulation (Peragallo & Seibold, 1993). It has been
found that these medications can interfere with each aspect
of the male human sexual response cycle (Rosenstock, 1995;
Weiss, 1991). There is some research indicating that
anti-hypertensives do not affect the female sexual response
cycle, but more research needs to be conducted to
determine any effects these medications have on women's
sexuality (Huws, 1993). We know at least one woman
whose ability to lubricate decreased when taking
anti-hypertensive medications. The anti-hypertensive
medications Prazosin (Minipress), Diltiazem (Cardizem or
Dilacor XR), and Reserpine are sometimes used to treat
Raynaud's phenomenon. In most cases, Prazosin seems to
have little effect on sexual desire and functioning. Diltiazem
and Reserpine sometimes cause sexual dysfunction by
altering erection and ejaculation in men (Mooradian, 1991;
Weiss, 1991) and lubrication in women. It is sometimes
possible to control Raynaud's phenomenon without
medications by adjusting the environment. Switching to a
different drug may also be helpful.
Anti-hypertensives are also used to treat
scleroderma-related kidney problems. Usually the
angiotensin-converting enzyme (ACE) inhibitors captopril
(Capoten) or enalapril (Vasotec) are prescribed, as they
reverse the deterioration of the kidneys as well as reducing
high blood pressure (Friedman et al., 1991; Peragallo &
Seibold, 1993; Satoh et al., 1994). Studies have shown that
ACE inhibitors are less likely to cause sexual dysfunction
than other anti-hypertensive medications (Huws, 1993).
Capoten produces less sexual dysfunction than Vasotec
(Weiss, 1991), although we know persons who experience
no adverse sexual side effects while taking Vasotec.
Antidepressants are used in the treatment of may chronic
illnesses (Rolland, 1994), but we have found no evidence in
the literature that they are routinely used to treat
scleroderma. If used, antidepressants can inhibit orgasm
(Rolland, 1994).
Those with severe kidney failure may need dialysis or
transplants. Dialysis can affect sexual activity because it is
a physically exhausting treatment (Schover, 1989). A
kidney transplant causes changes in physical appearance
including scars from the operation and iatrogenic effects of
immunosuppressant medications that are prescribed to
prevent transplant rejection. These effects include acne,
weight gain, and "moon face" (Schover, 1989). Altered
body appearance can be upsetting to the person with
scleroderma and thus affect sexuality.
One medicine, erythropoietin, can improve sexual
functioning. Many people with scleroderma, particularly
those who have had kidney failure, are anemic. In one
study, 23 of 26 adults undergoing hemodialysis treatments
reported improved sexual functioning after beginning
erythropoietin therapy. Specifically, men reported
improved erectile functioning, and women reported
increased sexual desire and more intense orgasms.
Amenorrheic women reported a return of their menses
(Lundin, Delano, & Quinn-Cefaro, 1990).
If there is erectile dysfunction, the man may want to engage
in sexual activity that does not require an erection while the
problem persists. If the erectile dysfunction is the result of
vascular changes, the application of topical nitroglycerin
may alleviate this problem (Ahmed, 1990). If emotional
issues are causing the dysfunction, counseling may be
indicated. Treatments for Peyronie's disease include the use
of steroids, vitamin E, or other medications. The fibrotic
plaque can be surgically removed, or a prosthetic device
can be implanted. Peyronie's disease occasionally
spontaneously remits (Ordi et al., 1990). If ejaculatory
dysfunction is a problem, Kegel exercises can help by
strengthening the pubococcygeal muscle (Johnson, 1981).
If persons with scleroderma do not want sex, they can hold
their partner(s) while the partner(s) masturbate (Loulan,
1984). Another possibility is to explore ways to express
sexuality that are not genitally focused. Some forms of
sexual enjoyment, such as watching a partner masturbate,
need not involve touching at all.
Relationships
The person with scleroderma, like any other individual,
may or may not be in a relationship. People with
scleroderma can be single, married, in committed
relationships, in casual relationships, or celibate. Between
2% and 22% of the population engages sexual activity with
the same gender or with both genders (Garber, 1995). It is
reasonable to assume that a comparable percentage of
people with scleroderma are lesbian, gay, or bisexual.
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