Download Sexual function among women

Sexual function among women
with disabilities
Carina Joy O’Neill, DO
Data from the 2000 US Census revealed
that of almost 50 million Americans with
disabilities, more than 25 million were
women.1 Some of these women are born
with disabilities. In other women, the disabilities develop during childhood (eg,
cerebral palsy, spina bifida) or are acquired
later in life as a result of accident or illness
(eg, chronic pain, multiple sclerosis, spinal
cord injury, stroke). The present article
focuses on women with physical disabilities and the concerns of these women
regarding sexuality.
Sexual function is an important domain
of quality of life and is vulnerable to disruption and dysfunction when a physical
disability is present.2 Healthy sexuality is
difficult to define, partly because of cultural, religious and personal values, all of
which contribute to one’s expression of sexuality. Sexuality does not comprise only
intercourse; it also comprises physical and
verbal expressions of warmth, tenderness,
love and affection.3
Lack of communication
with patients
The reasons for altered sexuality after a disability are complex, and they are rarely
discussed with patients. In a study by Teal
and Athelstan4 about sexuality after spinal
cord injuries, sexuality was found to be a
universal concern and an unexpressed anxiety of the women in the study. However,
85% of the women stated that they had
never discussed sexuality with their physicians, and 65% of the women stated that
they had not discussed sexuality with anyone, including their partners.4,5
Women with congenital disabilities also
report a lack of communication about sexuality. Studies suggest that few adolescents
and young adults with spina bifida report
having discussed sexual relationships with
a health professional or counselor, although
most of these young people would have
appreciated such counseling.6 Although
sexual dysfunction is not restricted to persons with disabilities, physical disabilities
substantially raise the incidence of sexual
dysfunction. Zorzon et al7 reported that
the incidence of sexual dysfunction is 73%
in individuals with multiple sclerosis,
39% in those with chronic disease, and
13% in the general population.
The personal and private nature of sex
produces a reticence among patients to
discuss their sexual concerns with physicians.
Furthermore, health care professionals
typically lack training in how to address
sexuality with their patients. Therefore,
even when we discuss these issues with our
patients, we might not have enough knowledge to adequately answer their questions
or provide appropriate counseling.8
Congenital versus
acquired disabilities
Development of sexuality in individuals
who have had disabilities since birth can
be expected to be substantially different
than development of sexuality in persons
who become disabled as adults. Social and
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environmental barriers—such as inadequate
social skills, social isolation, lack of opportunity, or lack of sexual knowledge—among
individuals with early-onset disabilities lead
to decreased sexual activity compared with
the level of sexual activity among the ablebodied population.3 Individuals who have
late-onset physical disabilities resulting from
such conditions as multiple sclerosis, spinal
cord injury, and stroke report various
changes in their sexual behaviors. These
changes typically include decreased sexual
interest, sexual satisfaction, and self-esteem,
as well as physiologic dysfunction.3
Four stages of sexual response
Normal sexual function can be divided into four stages: 1) excitement, 2) plateau,
3) orgasm, and 4) resolution.9
The excitement (ie, sexual arousal) stage
is characterized by increased heart rate,
blood pressure, and respiration—responses that can result from either touch (ie,
reflexogenic) or imagination (ie, psychogenic).9 In women, the excitement
stage is also defined by vaginal lubrication,
swelling of the labia, and clitoral erection.
The duration of this stage can range from
a few minutes to a few hours.
The plateau stage is described as a pleasurable sense of well-being.9 This stage can
be brief or prolonged.
The orgasm stage is defined as supreme
pleasure followed by a feeling of well-being
and satiation.9 Orgasm arises from the
brain’s limbic system. In women, orgasm
includes a motor response involving sympathetic contractions.
Resolution is the important bonding
stage of the sexual response, helping to
develop and maintain emotional intimacy
between partners. This stage lasts about
5 to 15 minutes and is followed by return
to the pre-arousal state.9
Causes of sexual dysfunction
Normal sexual function depends on the interaction between libido and potency. The
sudden onset of disability and associated issues, such as medical illness, pain and stress,
can contribute to decreased libido.
Although the potential causes of sexual dysfunction after a disability are broad, they
can be separated into organic causes (re-
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sulting from disability or illness) and psychosocial causes.10 No list can account for
every type of disability, but some causes of
sexual dysfunction include the following:10
Organic causes
䡲 Neurogenic regulation difficulties
caused by brain or spinal cord injury
䡲 Pain
䡲 Spasticity
䡲 Bladder or bowel incontinence
䡲 Cognitive challenges (eg, anger,
distractibility, inattention)
䡲 Fatigue
䡲 Weakness
䡲 Sensory changes
Psychosocial causes
䡲 Depression/anxiety
䡲 Personality changes
䡲 Fear
䡲 Communication issues
Effects of sexual dysfunction
on sexual response
During the excitement stage, female sexual
arousal disorder is associated with inability
to attain or maintain the lubrication and
swelling response. This disorder can stem
from emotional causes, such as anger or fear,
as well as physical changes associated with
the disability, such as insensate erogenous
zones or low estrogen levels.
Interestingly, the demarcation between
insensate and sensate skin may become a new
erogenous zone, which patients should be
encouraged to explore either themselves or
with a partner. Difficulties achieving vaginal
lubrication may be addressed by increased
stimulation or by use of lubrication jelly.11
Dysfunction in the plateau stage may
be prolonged or abbreviated by being insensate in the genital region or other regions
of arousal. Dysfunction in this stage may
also be associated with anxiety—and even
with distractibility in individuals with brain
injury or stroke.12 Sexual dysfunction in
women who do not progress through the
plateau stage is a form of anorgasmia.
The brain is the most important organ
in achieving orgasm. Multiple loci responsible for sexual activity arise from the brain’s
limbic system. Women with conditions that
affect the brain (eg, multiple sclerosis, stroke,
traumatic brain injury) may have difficulty
achieving orgasm. Women with these conditions may also experience orgasm
differently than they did before the conditions developed. For example, they may
experience increased spasticity followed by
prolonged relaxations, or they may experience an unusual warm sensation.13
Libido is decreased by serotonin and
increased by dopamine. Thus, medications
that affect the levels of these substances
can also affect sexuality. For example, selective serotonin reuptake inhibitors have
a 50% to 70% chance of delaying orgasm,
even if no neurologic disease is present.19
Difficulty achieving orgasm after developing a disability is a common source
of sexual dysfunction. Sipski et al13 compared women with spinal cord injuries to
able-bodied women in terms of their ability to achieve orgasm in a laboratory
setting. Patients used audiovisual erotica
with and without manual stimulation.
Results showed that 52% of the women
with spinal cord injuries were able to
achieve orgasm, compared to 100% of the
able-bodied women. Of note, the rate of
arousal in each group was similar.13
Dysfunction in resolution occurs when
the sexual interaction is unsatisfying. This
dissatisfaction may result from a number
of reasons, such as pain, a demanding
partner, and feelings of shame because of
the disability.14
Special considerations
Spasticity of a woman’s pelvic floor and adductor muscle can restrict penile penetration.
Premedication with benzodiazepine can reduce such spasticity. Patients with neurogenic
bowel or bladder should empty the bowel
and bladder before sexual activity in order to
avoid incontinence during intercourse.12
Patients with spinal cord injuries should void
or self-catheterize after coitus to reduce the
risk of urinary tract infection.12
For most women with disabilities, sexual interaction is safe. Many patients who
have had strokes are fearful that participating in sexual activities might lead to another
stroke, but findings from a study by
Ebrahim et al suggest sexual intercourse is
not likely to result in substantial increase in
risk of strokes.20 However, if a patient had
a hemorrhagic stroke from an aneurysm
and is awaiting surgery, sexual interactions
should be avoided until after surgery.
For women with spinal cord injuries
higher than the level of the T6 vertebra, a
potentially life-threatening condition can
occur after orgasm. Autonomic dysreflexia
is an acute syndrome of massive sympathetic discharge resulting from increased
autonomic activity after a stimulus. Such a
stimulus could be sexual intercourse and
orgasm, extended bladder or bowel evacuation, or any painful stimuli that does not
cause injury.13 Signs of autonomic dysreflexia include pounding headache,
sweating, nasal congestion, facial flushing,
piloerection and reflex bradycardia.
Autonomic dysreflexia is a serious condition that can lead to confusion, visual
disturbance, loss of consciousness, encephalopathy, intercerebral hemorrhage,
seizure, atrial fibrillation, flash pulmonary
edema and even death.15
A patient should be informed of the
signs of autonomic dysreflexia and advised
that, if it occurs, she should sit upright with
her feet over the side of the bed. If possible, she should also monitor her blood
pressure and catheterize her bladder. If
symptoms persist, the patient should contact emergency response.13,15
contraceptive methods that confer protection against sexually transmitted diseases.1
Contraception
䡲 Contraceptive foam
Foam is a readily available and accepted
contraceptive method. However, contraceptive foam is only moderately effective at
preventing pregnancy, and it does not protect against sexually transmitted diseases.1
Women with disabilities make their decisions about having children in the same
manner as do able-bodied women.16 For
women who are of childbearing age and
are not ready for children, clinicians should
discuss birth control options. In many cases,
women with disabilities are not offered
contraception because their physicians erroneously presume them to be asexual. The
following special considerations must be
taken into account when discussing birth
control options with disabled women.1,17
䡲 Coitus interruptus
The literature does not support the use of
this method, also known as withdrawal, as
an effective means of birth control.1
䡲 Condom
Condoms are a popular contraceptive choice
because they are readily available. For a
woman who has an indwelling catheter, this
birth control method would not be recommended because the device could tear the
condom. Condoms are one of the few
䡲 Diaphragm
A woman requires dexterity to place a
diaphragm, though her partner can be
trained to insert the diaphragm before intercourse. If a woman has weakened pelvic
floor muscles, the diaphragm may not hold
in place, rendering it ineffective as a birth
control option.1 In addition, diaphragms
are associated with increased risk of urinary tract infections, which may be of
special concern for women with disabilities, particularly those who are predisposed
to autonomic dysreflexia.17
䡲 Fertility awareness
(rhythm method)
Contraceptive methods based on monitoring of body temperature will not be reliable
in women who have spinal cord injuries.
13
䡲 Oral contraceptive
The most cited concern regarding use of oral
contraceptives by women with recent-onset
immobility is the risk of thromboembolism
or deep vein thrombosis. With the use of pills
containing low-dose estrogen, there is a low
incidence of deep vein thrombosis; although
cigarette smoking aggravates the risk of deep
vein thrombosis and thromboembolism.
Use of progestin-only pills can be considered for patients in whom estrogen is
contraindicated, with the understanding
that these pills are not as effective as pills
containing estrogen and that there is little
margin for error in the dosage schedule.1
Patients must be able to maintain dosing and have sufficient manual dexterity to
open medication packaging to take oral
contraceptives. Continuous cycling by
eliminating the placebo week of the contraceptive medication to avoid menstruation
can be considered for patients who have difficulty with menstrual hygiene.1
䡲 Tubal ligation
This surgical procedure is a permanent
birth control option. Women will continue to menstruate after tubal ligation, and
this option may not be appropriate for
women who have difficulties with menstrual hygiene.1
Nor will such methods be reliable in
women who are at risk for frequent infections, which can affect body temperature.1
䡲 Hysterectomy
This surgical procedure is another permanent birth control option. Women with
disabilities are more likely to undergo hysterectomy than are women without
disabilities. Hysterectomy, rather than tubal
ligation, is used for sterilization in those
women who have trouble managing their
menstrual hygiene.1
䡲 Intrauterine device
The use of intrauterine devices may be considered for women with disabilities, but
women with decreased sensation should
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be carefully evaluated before they use this
contraceptive method because they may
not feel symptoms of pelvic infection or
ectopic pregnancy. Irregular bleeding with
the use of intrauterine devices can pose difficulties with menstrual hygiene.1
䡲 Medroxyprogesterone injection
Medroxyprogesterone injection is a popular contraceptive option among women
with disabilities. Its use may initially involve some irregular bleeding, which can
be of concern for patients who have difficulties with menstrual hygiene. However,
amenorrhea occurs after the first few menstrual cycles. An increased risk of
osteoporosis must also be considered with
medroxyprogesterone injection.1
䡲 Vasectomy
For a woman who has only one sexual partner and who wants permanent birth
control, vasectomy may be considered as a
contraceptive option.1
Physical and
sexual abuse issues
Health care providers should not assume
that women with disabilities are no longer
targets for physical or sexual abuse, and the
providers need to be aware of the physical
and psychological signs of trauma in their
patients. In one national mail survey, no
difference was found between the proportion of women with physical disabilities and
the proportion of able-bodied women who
reported being physically abused (35% in
both groups) or sexually abused (40% in
both groups).18 Intimate partners were the
primary offenders in both groups of women.
However, women with physical disabilities
were more likely to experience physical or
sexual abuse by attendants or caregivers than
were able-bodied women. In addition,
women with physical disabilities experienced
abuse for significantly longer periods than
did women without physical disabilities.
Standard abuse assessment tools that
focus on physical or sexual abuse from intimate partners are insufficient for assessing
abuse in women with disabilities. Abuse to
women with disabilities more likely will be
identified if disability-specific questions
are added to the assessment. Compared
with use of the standard questions, the use
of the following questions, consisting of
two standard physical and sexual assault
questions and two disability-specific questions, revealed an additional 2% of women
with disabilities who suffered abuse.18
䡲 Within the past year have you
been hit, slapped, kicked, pushed,
shoved, or otherwise physically
hurt by someone?
䡲 Within the past year has anyone
forced you to have sexual activities?
䡲 Within the past year has anyone
prevented you from using
a wheelchair, cane, respirator,
or other assistive device?
for activities of daily living, which include
dressing and undressing, eating, mobility (as
opposed to being bedridden), personal
hygiene, transferring from bed to chair and
back to bed, and voluntarily controlling
urinary and fecal discharge.
Final notes
Sexual function among women with
disabilities is complex. Sexuality is an important domain of quality of life. Women with
physical disabilities often do not discuss sexuality with either their physician or their
partner. Physicians should start the dialogue
with patients. Psychological, social and physical factors exert a strong impact on the sexual
functioning of women with physical disabilities.3 A better understanding of the barriers
to fulfilling sexual interactions will allow
physicians to discuss these issues with their
patients and help address issues as they arise.
References
Clinic visits are typically the only time
that disabled women come into contact
with health care providers. Thus, there is a
need for disability-specific routine assessment for physical and sexual abuse in all
women with disabilities.
In many states, if a physician suspects that
a patient with a disability is a victim of abuse
or neglect, the physician is legally obligated
to report the case to state law enforcement
authorities. A disabled person, for such legal
purposes, is defined as any person who is totally or partially dependent on other people
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Carina Joy O’Neill, DO, is an instructor in physical
medicine and rehabilitation at Harvard Medical
School. She serves as medical director at Spaulding
Rehabilitation Outpatient Center in Braintree,
Massachusetts and is affiliated with Massachusetts
General Hospital.
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