Sexuality and Disability

Sexuality and sexual dysfunction in patients with physical or neurologic disabilities are often overlooked by medical personnel, but they are topics of great importance to the patient and to those with whom he/she shares significant relationships. People with disabilities are sexual individuals with sexual desires and concerns that require the attention of health care providers. ^[1] The largest myth about people with disabilities is that they are less sexual than are persons without disabilities. Other myths regarding sexuality include the following:

• Sex means sexual intercourse

• Talking about sex is not natural, proper, or necessary

• Sex is for younger people

• Men should initiate sexual activity

• Sex should be spontaneous

• A firm penis is a requirement for satisfying sex

• Quality sex ends with an orgasm

Too often, physicians overlook aspects of function that may be less obvious than the injury or illness that brought the patient to the rehabilitation team. The quality of personal relationships in general, and sexual ones in particular, exerts great impact on a patient's self-esteem and support network.

The multiple physical, psychological, and emotional changes that may occur after catastrophic injury or as a result of congenital disability or chronic illness must be addressed not only in the context of the patient, but also of the patient's support system. The issue of sexuality needs to be addressed during the acute and long-term rehabilitation processes. Sexual function recovery is no less important than any other aspect of functional rehabilitation from a disabling disease or injury. ^{[2, 3, 4]}

Sexual dysfunction in the presence or absence of disabling conditions has many causes. Organic/structural, psychological, or relationship issues may need to be considered, regardless of the underlying disability diagnosis.

Structural problems that can contribute to erectile dysfunction or to sexual arousal disorder vary widely; they may involve the circulatory or nervous system or may be associated with anomalies in the spine that impact those systems. Pain or limitation of motion from injuries may depress interest in sex or sexual performance. The dysfunction also may be of psychological origin. The site of the problem (eg, the nervous or circulatory system) governs the type of intervention needed.

Organic and psychological causes of sexual dysfunction include the following:

• Vascular disease

• Endocrine disorders

• Musculoskeletal disorders

• Neurologic disorders

• Psychogenic disorders ^[5]

Erectile dysfunction

The term impotence was previously used to describe sexual dysfunction in men. The term erectile dysfunction is used currently to connote an inability to achieve or sustain sufficient erection for satisfactory sexual function. Estimates suggest that 50% of men aged 40 years or older have experienced some degree of erectile dysfunction.

The clinician should understand that a patient who has sustained head injury may experience erectile dysfunction that is not necessarily related to the head trauma. Consider all possible conditions that may be relevant in assessing the patient's sexual functioning. Patients with undiagnosed diabetes or hypertension may experience erectile dysfunction as one of the first signs of disease.

Atherosclerosis affects the circulatory system, reducing the blood supply to the heart and brain. Reduced blood flow also affects many other parts of the body, including the genitalia, and can change the degree of erection or of vulvar engorgement and lubrication that occur. Thus, sexual dysfunction must be viewed as a systemic process rather than as a local one. Perform a full diagnostic workup in assessing any patient's sexual functioning.

Female sexual arousal disorder

Sexual arousal is defined as increased heart rate, blood pressure, respiratory rate, and lubrication/swelling response associated with erotic psychic and physical stimulation. In women, female sexual arousal disorder is associated with an inability to attain or maintain a sufficient lubrication/swelling response. Low estrogen levels, as well as negative emotions, such as anger or fear, may inhibit arousal and lubrication. ^{[6, 7, 8]}

Neurologic dysfunction

These include problems with the autonomic, central, or peripheral nervous system. Neurologic conditions, such as spinal cord injury (SCI), traumatic brain injury (TBI), cerebrovascular accident, and multiple sclerosis (MS), present similar challenges. From a physiologic standpoint, certain sexual dysfunctions can be explained on the basis of which parts of the nervous system have been damaged.

Problems in the central nervous system may be associated with certain symptoms. Symptoms are dependent on the level of involvement of the brain, spinal cord, or peripheral nerves and may include the following:

• Spasticity

• Incontinence

• Fatigue/weakness

• Sensory changes

• Cognitive/perceptual changes

Autonomic dysfunction resulting from brain dysfunction or SCI may impact stages of the sexual response cycle. The fight-or-flight response is generated by the sympathetic nervous system. This impulse can be increased psychogenically by anxiety or by an organic lesion in the brain or spinal cord.

With increased sympathetic tone, excessive constriction of blood flow is common, reducing engorgement of sexual organs and orgasm. Multiple levels of dysfunction can exist. Head trauma, for example, may be accompanied by other injuries (eg, spinal injuries, soft-tissue injuries, fractures). Neurogenic bowel and bladder can also pose difficulties for successful sexual function.

A study by Di Pauli et al found that the prevalence of sexual dysfunction in a group of patients with MS was 47%. Logistic regression analysis indicated that risk factors for sexual dysfunction in persons with MS include having ever smoked, a higher Expanded Disability Status Scale score, bowel and/or bladder dysfunction, and depression. Disease-modifying treatment, however, was significantly linked to a reduced risk of sexual dysfunction. Physiologically, luteinizing hormone and follicle-stimulating hormone levels were found to be higher in females with MS who had sexual dysfunction, while 17-beta estradiol, androstenedione, dehydroepiandrosterone sulfate, estrone, and anti-Müllerian hormone levels were lower. In males with MS who had sexual dysfunction, levels of inhibin B (which is linked to sperm count) were found to be significantly reduced. ^[9]

Adverse effects of medications

Cross-reactions between drugs or increased sedation may result from certain medications. Spasticity that interferes with movement and relaxation can be reduced by medications (eg, Dantrium, baclofen). However, medications may impact stages of sexual function. Substances such as alcohol, cigarettes, and nonprescription drugs also can impair sexual function.

Antidepressant medications may help the depression that can result following a traumatic injury. In some patients, however, sexual dysfunction can occur as an adverse effect of these drugs. Many of the selective serotonin reuptake inhibitors, for example, can cause delayed orgasm or erectile dysfunction.

Amputation

Although a limb amputation is a rare direct cause of sexual dysfunction, amputees report reduced libido post amputation. The amputation site and the etiology have a negligible impact on the sexuality of the amputee. Because sexual function in amputees is preserved, most of the patient education and counseling for these patients involves psychological issues rather than neurologic impairment. Rehabilitation professionals should be more sensitive to the sexuality of disabled patients without a neurologic impairment, such as patients with limb amputations. ^[10]

Masters and Johnson describe the following 4 major stages of sexual response, each of which may be affected by disabling conditions:

• Excitation - Characterized by increases in heart rate, blood pressure, and respirations

• Plateau - Refers to a surge of sexual tension

• Orgasm - The release of endorphins with ejaculation

• Resolution - The cool-down period

Desire may be lessened by reduced ability to visualize, fantasize, or respond to usual cues. Sexual interest overall may be reduced. The plateau phase may be prolonged or shortened by erectile dysfunction or anxiety.

Excitation and orgasm may be hampered by reduced descending signals or by decreased sensory feedback from the genital region, skin, and other areas of arousal. Anxiety may hinder orgasm, or insufficient buildup of excitation may not be possible because of distractibility.

Resolution is the important intimate bonding phase that should draw couples closer together. If sexual interaction is perceived as too demanding or unsatisfying, however, couples may not be able to enjoy a sense of closeness.

Sexual dysfunction in SCI can result from many factors (eg, ejaculatory failure) because of neuromuscular dysfunction or obstructive changes from recurrent genitourinary infections. Average sperm motility rates among males with SCI are considerably lower than for the average male without SCI. This phenomenon can limit a man's capacity to father children. ^[11]

The level of SCI affects a male's ability to have an erection and the female's ability to lubricate and experience orgasm. A male with SCI can experience 2 types of erections, psychogenic and reflex. A psychogenic erection takes place as a result of descending stimulation from the brain associated with mental stimulation through fantasy, visual stimulation from the viewing of erotic materials, or participation in sexually stimulating activities. Psychogenic erections do occur in patients with sacral lesions.

A reflex erection occurs in association with direct physical contact with the penis or other erotic areas, such as the ears, nipples, or neck. A reflex erection is involuntary and can occur without any sexual or stimulating thoughts.

The nerves that control erection are located in the sacral segments (S2/S4) of the spine. SCI that occurs above these segments results in loss of the ability to have psychogenic erections. Thus, the male with SCI is no longer able to achieve an erection by becoming emotionally or mentally excited; with physical stimulation, however, these males may be able to have reflex erections.

Males with SCI can experience orgasm, especially when concentrating on their partner's arousal. The ability to ejaculate, however, decreases dramatically after SCI.

Increasingly successful fertility enhancement has been seen with electroejaculation techniques. ^[12] Physiologic limitations include decreased sperm count and decreased sperm motility (with increased numbers of abnormal sperm).

Incontinence (ie, lack of full control of the bowel or bladder) can be challenging; however, incontinence can be overcome with timing of catheterization or voiding so that the bladder is emptied prior to sexual relations. Use of certain medications (eg, Ditropan) may help to relax the bladder, improving bladder capacity and reducing irritability.

Overall education for individuals and couples faced with SCI emphasizes redefining and expanding the boundaries of sexual expression. Sensory amplification is a technique whereby the individual concentrates on a physical stimulus in order to amplify sensation, sometimes to the point of mental orgasm.

Sexuality has been less studied in female patients with SCI than it has in male patients. ^{[6, 7, 8]} Significant decline in sexual intercourse frequency and impaired ability to achieve orgasm occur postinjury. Females with SCI who are younger than 18 years at the time of their injury have a higher risk of not experiencing intimacy than do women who are older than 18 years at the time of their injury.

Most women interviewed concerning this issue received little or no health care provider education concerning the sexual aspect of their catastrophic disability. ^[13] Female fertility remains intact postinjury, and contraceptive methods should be used to prevent unwanted pregnancy.

Diffuse or focal brain injury may result in mild to severe physical and cognitive impairments that may impact sexual function. Diffuse injury may impact deep hemisphere structures that regulate sexual function; eg, direct injury to the pituitary gland or hypothalamus can disrupt normal hormonal functions. Imbalance in available neurotransmitters may disrupt normal function.

Thus, the practitioner must be aware that traumatic effects on different areas of the brain lead to the alteration of certain functions; such changes, in turn, can result in specific symptoms related to the patient's sexuality, including the following:

• Amygdala - Sexual disinhibition/hypersexuality

• Brainstem - Decreased libido, inappropriate processing of information

• Hypothalamus - General initiation, dyscontrol of sexual behavior, hormonal regulation

• Frontal lobes - Sexual apathy, loss of initiative

• Pituitary gland - Infertility, decreased secondary sex characteristics, decreased libido

• Septum - Decreased libido, impotence, decreased ability to experience pleasure/orgasm

• Temporal lobe - Diminished responsiveness

• Thalamus - Hypersexuality

Brain injuries usually are not discrete lesions but instead represent a combination of involvement of different areas of the brain, with overlapping challenges. The main challenges are the occurrence of disinhibited or socially inappropriate behavior demonstrating a lack of restraint, a lack of initiation, or an inability to find a start button to get things going. Sexual dysfunction (eg, hypersexuality, hyposexuality) may result.

Cognitive challenges

Damage to the brain, whether traumatic, vascular, or hypoxic, may result in numerous cognitive changes that may be associated with behavioral changes (eg, anger, compulsion, inconsistency). Lack of interest in sexual activity because of pain, fatigue, or loss of libido may frustrate both partners.

Reduced memory and organizational skills may result in easy distractibility and inattention to previously observed details in a patient's sexual activities. For instance, a couple may have a usual routine, knowing what the other likes, possibly in sequence or cued with certain gestures or comments. Such a routine may be forgotten or changed by the person with brain injury.

A person with brain injury may not be able to pick up on subtle cues, and the partners may need to start over as if from the beginning of the relationship. Sometimes, memory can be impaired to the extent that there is no recollection of sexual encounters, resulting in frequent demands for sex. Patients with hypoxia frequently manifest this type of behavior. Memory impairment makes the partner feel unappreciated and used, particularly when accused of refusing to participate. Use of a memory book may be helpful. The partner who is not disabled notes dates and times of sexual encounters and can refer back to this record if needed for reference.

Sometimes a person who was sexually aggressive before sustaining illness or injury may become more passive or forget about sex altogether unless reminded. On the other hand, a sexually passive person may become quite disinhibited. Challenges may develop with emotional lability (eg, crying or laughing not necessarily associated with activities at hand). This behavior may be quite disconcerting in the midst of passionate lovemaking. Insuring adherence to safe sex protocols is a further challenge, as is consistent use of contraceptive methods that require physical coordination and memory.

Communication problems

Communication problems due to speech and language deficits, such as nonfluent speech, word-finding deficits, and memory loss, may aggravate attempts to work out mutually agreeable solutions. Thus, a neutral intermediary, such as a counselor, may be helpful.

Stroke and sexuality

Following a cerebrovascular accident, a significant decline in sexual activity occurs due to psychological reasons, rather than medical ones. Partners also play a role, being, for example, apprehensive regarding the possibility of a stroke relapse. More than half of male patients report erectile dysfunction. Impaired sexual function poststroke is not correlated with gender, marriage duration, level of education, depression, or the hemisphere involved. ^[14]

Survey results regarding TBI and sexuality

From 1998-1999, an anonymous sample of patients with TBI was surveyed, with frank input requested from the patients concerning their relationship changes after TBI. Two mailings were sent out, with one being made to a list of clients still in treatment, and the other being included as part of a quarterly journal for patients with brain injury. A total of 29 responses (from 23 patients and 6 partners) were received.

Preliminary survey results

Most patients with head injuries and their partners were older than 30 years (93%), with 34% of those responding being older than 50 years. Male respondents totaled 53%, and female respondents, 45% (less than 100% due to nonresponse). All of the respondents were at least 1 year out from injury, and 83% had been in a relationship at the time of injury.

While most patients (95%) and partners (83%) described their relationships as great or good prior to head injury, by 6 months after head injury, a shift had occurred, with 72% of survivors describing the relationship as poor or terminated.

Interestingly, approximately one half (56%) of the married survivors described their relationship as poor 1 year out from the injury, yet 83% of the married partners described their relationship as great or good.

One hundred percent of survivors and their partners were sexually active prior to the injury. Half of the partners considered the sexual performance of the partner with head injury to have changed, and 82% of patients felt that their own performance had changed since the injury.

The following 4 major problem areas were cited by survivors and partners with regard to changes in sexual performance:

• Fatigue - 78% of survivors felt that it was a problem; 83% of partners noted it

• Decreased interest - 60% of survivors and 50% of partners remarked on it

• Easy distractibility - 60% of survivors and 66% of partners noted it

• Changed sensations - 60% of survivors cited it, as did 33% of partners

Additional areas of concern included pain, erectile dysfunction, and physical changes.

Individuals and couples coping with the sexual limitations of disability must work to accept those limits and develop options available to them. A constellation of limiting factors may be involved, such as the following ^[15] :

• Depression - Many patients develop depression after traumatic injury; depression can be associated with decreased libido and an inability to enjoy previously pleasurable activities

• Altered body image

• Personality/behavioral changes

• Social distance

• Anxiety

• Fear of rejection

• Fear of inadequate performance

• Fear of pain/spasticity interference

• Negative memories of prior experience

In addition, couples may be challenged by such issues as the following:

• Change in role

• Caregiver-versus-lover conflict

• Communication problems

• Contraception

The impact of a disabling condition on a couple is profound and complex. Role changes can interfere with adult-to-adult relationships. Making the transition from being an anxious observer/caregiver in the initial recovery phase back to being a lover may be difficult. This situation may be exacerbated if the necessary role changes include greater responsibilities (eg, paying bills, working, making decisions that previously were the responsibility of the person with the impairment). Confusion and resentment may develop.

Disagreement over the timing of pregnancy subsequent to injury may be a problem, and it may be further compounded by physical or mental challenges involved in using contraceptive devices.

Communication problems associated with speech and language deficits (eg, nonfluent speech, word-finding deficits, memory loss) may aggravate attempts to work out mutually agreeable solutions. A neutral intermediary (eg, a counselor) may be helpful.

Survivors may feel self-conscious about changed physical or mental states. In certain conditions (eg, TBI), individuals may not demonstrate any physical deficits, further compounding the partner's frustration with multiple cognitive changes.

Few opportunities for social interaction may exist, causing patients to feel shy and to fear rejection. These individuals may not have had much sexual experience prior to onset of the disabling condition or already may have had problems with sexual dysfunction, now further compounded by effects of the condition. Patients or partners may be fearful of increasing pain or physical damage.

Sexual identity and confusion can cause great consternation. These issues must be handled with sensitivity and compassion to help avoid reduced self-esteem and depression. Recommend discussion of such questions with a knowledgeable counselor or sex therapist so that successful strategies can be worked out.

Team approach

Health professionals who assist in the diagnosis and treatment of sexual dysfunction, as well as with relationship problems, may include physiatrists, urologists, gynecologists, internists, psychologists, and certified sex therapists. ^[16]

Physical examination and history

Before the patient resorts to using erectile aids or other interventions, perform a thorough physical examination and implement a coordinated team approach to assess for possible accompanying medical conditions.

Take a complete history of both partners and perform a complete physical examination, including a genitourinary examination. Order basic laboratory screening (eg, blood pressure, chemistry panels) to rule out hormonal or metabolic imbalances. Ask male patients whether they wake up with an erection. If so, some physiologic function is intact. Conduct medication review with the treating physician or pharmacist to rule out intolerable side effects or cross-reactions.

Counseling

Sexual counseling can help the individual to learn how to communicate his/her needs and feelings concerning sexual issues. Implementation of strategic solutions may require assistance from the partner. The person who is disabled may find it difficult to admit to sexual dysfunction and to ask for assistance.

Annon describes a system known as PLISSIT, which includes the following ^[17] :

• Permission

• Limited information

• Specific suggestions

• Intensive therapy

Care providers can have a significant impact on a patient's recovery process. Inclusion of sexual history as part of the evaluation and treatment process validates or gives the patient permission to include healthy sexual functioning as part of overall functional goals.

When possible, ask both partners to share information regarding sexual functional status before and after the disability. They need to think in terms of physical and mental changes and to work together, possibly with a counselor, to devise solutions or optimal coping strategies for those problems. The level of information provided should be tailored to the couple's level of comprehension.

Couples are encouraged to use a desensitization approach, returning gradually through each stage of the sexual response cycle. Advise that they first get used to sleeping together again. After a while, they should practice minimal intimacy, such as kissing, fondling, and hugging. Discuss how that went, and when they are ready, have them proceed through each subsequent step. This eliminates the goal-post mentality of having to reach orgasm each time, while permitting an enhancement of the quality of interaction that is comfortable for both participants.

Addressing organic issues

Once specific areas of dysfunction are identified, make suggestions to address those dysfunctions. For example, pain and limitation of motion may limit interest or adversely affect performance.

Relaxing massage may be incorporated into foreplay to reduce pain, spasms, and anxiety. Side-lying positions sometimes are tolerated better. Strategic placement of cushions or pillows may enhance the experience for both partners.

Timing

Choosing more appropriate times for sexual activity, such as the morning or after a warm shower or bath, can minimize the factors that encourage one partner to avoid physical contact. Taking advantage of the best time of the day may lessen the effects of fatigue. The morning may be a better time than the evening; the beginning of the week may be better than the end of the week; a quiet day may be better than a busy day.

Fatigue

Strengthening and endurance training as part of the overall rehabilitation program also can help to improve physical function and endurance during sexual relations. The conditioning program designed for the patient also should address mental and physical stress reduction, as well as energy conservation during sexual relations.

Sensory changes

Partners need to communicate about sensory changes. What previously was pleasurable may be irritating, and vice versa. Reduced sensation may be a problem in parts of the body ^[18] ; thus, advise that foreplay activities be directed to areas with better sensation. This adaptation could mean the difference between lying on one side or the other to optimize body contact and stimulation.

Longer foreplay may be needed to achieve sufficient stimulation, which could be frustrating for a person with TBI who has reduced attention or easy distractibility. Discussion between partners in a relaxed manner about what has changed and working together creatively to optimize remaining potential may lead to better physical relations.

Erectile dysfunction

Many males have erections; however, these erections may not be firm enough or last long enough for sexual activity. Several options are available for males to achieve erections, including penile injections, surgical implants, the vacuum pump, and oral medications.

Penile injection therapy involves injecting medications into the corpus cavernosum of the penis to relax smooth muscle and promote blood flow by inhibiting sympathetic tone. Such medications include papaverine, phentolamine, and prostaglandin E1. Use of these medications can produce a hard erection that can last for 1-2 hours. Severe adverse effects (eg, prolonged erection, priapism) may result if the medications are not used correctly. Pain and ischemic damage to the penile tissue can result from improper use. Administration of penile injections may be difficult for a patient with limited hand function secondary to SCI. He must have a partner who is willing to learn to give the injections.

Before the introduction of penile injections, surgical implantation of a penile prosthesis was commonly used in individuals with SCI. The irreversible surgical procedure involves inserting an implant directly into the erectile tissues. The 3 types of implants available are semirigid or malleable rods, fully inflatable devices, and self-contained unit implants. Risks include skin breakdown in an insensate patient and infection.

The vacuum pump is the least invasive erection aid. In most individuals, this mechanical, nonsurgical device produces penile engorgement and rigidity sufficient for intercourse. The penis is placed in a vacuum cylinder. Air is pumped out of the cylinder, causing blood to be drawn into the erectile tissues. The erection can be maintained by placing a constriction ring around the base of the penis. This ring also can prevent the urinary leakage that can occur in an individual with SCI who has not emptied his bladder before sexual activity or in anyone who has a reflex bladder. Pumps are available in manual and battery-operated models.

Oral medications for erectile dysfunction, such as sildenafil citrate (Viagra), tadalafil (Cialis), and vardenafil (Levitra), are phosphodiesterase-5 (PDE5) inhibitors that relax smooth muscle by enhancing the nitric oxide effect, promoting effective erectile function. ^{[19, 20, 21]} These oral medications are convenient to use and do not require any preparation, which may delay and detract from the enjoyment of sexual activity.

Viagra and Levitra have been found to be effective for the management of erectile dysfunction in patients with SCI who have either a complete or an incomplete lesion, as reported in randomized, controlled studies. No adverse side effects, such as autonomic dysreflexia, have been reported.

However, men who take nitrate medication for coronary artery disease should not take PDE5 inhibitors, due to associated hypotension. Another reported adverse side effect is a sudden decrease or loss of vision in 1 or both eyes when taking these medications.

Guidelines

Guidelines on male sexual dysfunction from the European Association of Urology (published 2009; revised 2013) state the following regarding the treatment of erectile dysfunction ^[22] :

• Lifestyle changes and risk factor modification must precede or accompany erectile dysfunction treatment (recommendation grade: A)

• Pro-erectile treatments have to be given at the earliest opportunity after radical prostatectomy (recommendation grade: A)

• When a curable cause of erectile dysfunction is found, it must be treated first (recommendation grade: B)

• PDE5 inhibitors are first-line therapy (recommendation grade: A)

• Inadequate/incorrect prescription and poor patient education are the main causes of a lack of response to PDE5 inhibitors (recommendation grade: B)

• A vacuum erection device can be used in patients with a stable relationship (recommendation grade: C)

• Intracavernous injection is second-line therapy (recommendation grade: B)

• Penile implant is third-line therapy (recommendation grade: C)

Female sexual arousal disorder

A randomized study by Derogatis et al suggested that self-administration of subcutaneous bremelanotide, a novel heptapeptide melanocortin receptor-4 agonist, can effectively treat female sexual arousal disorder. The study involved 327 premenopausal women with female sexual arousal disorder, hypoactive sexual desire disorder, or both. Compared with women taking placebo, those taking bremelanotide showed statistically significant improvements in total scores in the Female Sexual Function Index and the Female Sexual Distress Scale-Desire/Arousal/Orgasm, as well as in the number of satisfying sexual events per month. ^{[23, 24]}

Summary

In summary, people with disabling conditions are human beings, just like everyone else. They have human needs just like everyone else. Although they may have changed after their injuries, they have not been rendered asexual. Patients and their partners have a right to know about every aspect of their bodies, the changes that have taken place, and useful solutions to overcome those changes. Physicians need to ask open-ended questions and to be prepared to discuss some of the pathophysiology of sexual dysfunctions in order to educate and reassure the patient and his/her partner.