Sexuality and Disability, Vol. 10, No. 1, 1992
Impact of Altered Sexuality and Sexual Function in Spinal Cord Injury: A Review Meredith E. Drench, M.Ed., P.T. ~,2
The purpose of this article is to review the literature regarding the impact of altered sexuality and sexual function in individuals with spinal cord injuries. Dependent on both biological and psychological factors, sexual behavior and identity can be deleteriously affected by a spinal injury. The relationship of sexuality, sexual identity, and self-concept is discussed, and a distinction between sex and sexuality is drawn. Attitudes, emotions, and functional capabilities are explored, and readjustment and rehabilitation issues are considered. Sexual adjustment can be critical in the total rehabilitation of a person with a spinal cord injury. KEY WORDS: Rehabilitation; self-concept; sexual function; sexuality; spinal cord injury.
INTRODUCTION "Why won't they talk about it? Don't they know, or are they afraid of something? It's my sex l i f e . . , or is it?" This frustrating account from a young man in his early twenties sharpens the focus on a rather important, but often overlooked, aspect of total rehabilitation. Dr. Theodore Cole, of the University of Minnesota's Physical Medicine and Rehabilitation Department in the School of Medicine, learned from a panel of paraplegics that if these men "had their choice between getting back their walking or their normal sexual function, they'd choose sex - - it was that important to them" (1). Individuals with spinal injuries experience the same sexual feelings that nondisabled people do, and the ~Director, Adaptive Health Associates, Inc., East Greenwich, Rhode Island. 2Correspondence should be directed to Meredith E. Drench, Adaptive Health Associates, Inc., 56 Hickory Drive, East Greenwich, Rhode Island 02818.
0146-1044/92/03004)003506.50/0 © 1992HumanSciencesPress,Inc.
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relationship between body image, sexual identity, and self-concept is just as strong. Impaired sexual functioning in people who have chronic illness and physical disability can have an adverse effect on their medical, vocational, and psychosocial rehabilitation. It has been found that these individuals have a greater tendency to be more depressed, anxious, and overwhelmed by rehabilitation problems (2).
SEXUALITY, SEXUAL IDENTITY, AND SELF-CONCEPT In any discussion of sexual function, it is important to appreciate the concept of sexuality and to distinguish between sex, sex acts, and sexuality. Sex, as Trieschmann (3) describes it, is one of four primary drives, along with thirst, hunger, and avoidance of pain. Behaviors that involve genitalia and erogenous zones are considered sexual acts. The combination of the two and the psychosocial aspects of emotions, attitudes, and relationships are learne~ communications and form the essence of sexuality. The concept of sexual identity involves a sense of masculinity and feminity, derived from not only biological sex drives but from the individual's perception of his sexual being, based upon previous experiences of conversations, interests, attitudes of society, the culture, and significant others, such as parents and friends. This sexual identity serves as a mode of expression for the individual. Through these experiences, which start very early in life, specific valuations are placed on certain body functions, body parts, and behaviors (4). An individual can then feasibly place minimal value on the sexual interpersonal relationship and maximum value on the ability to perform sexual intercourse. Physical disability may complicate the situation by limiting mobility, impairing motor and sensory pathways, and adding pain or discomfort. A loss of ability for normal erection, ejaculation, and fertility can have a devastating, demasculating effect on a man and can reverse his sexual and social role into a more passive one (5). Culturally, man has highly valued performance, and this sexual inadequacy affecting basic psychosocial needs can markedly impede overall adjustment and acceptance of his disability. Women, by contrast, have been found to have less difficulty readjusting their sexual identity, perhaps because they traditionally have had a more passive sexual role identity, seem to place higher values on the intimate interpersonal relationships of sexuality, such as tenderness, care, and concerns, and have relatively less impaired genital function to perform sexually. A spinal cord injury can endanger the perceived sexual identity, placing the self-concept in jeopardy. In a study by Berger (6), impotent male paraplegics appeared less adjusted to their disability and more distressed in other
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areas of their personalities compared to non-impotent male paraplegics. The impotent group demonstrated increased expressions of depression, anxiety, hopelessness, hostility, aggression, preoccupation with the body, and feelings of castration, mutilation, and body degeneration. Impotent subjects experienced less vitality, were more overwhelmed by their problems, and had greater difficulties establishing and maintaining close relationships and identifying with their gender than the nonimpotent subjects. Self-concept and self-worth may be greatly diminished after a spinal cord injury, and sexual adjustment can be critical in the total rehabilitation. Depression, common after an individual has faced the initial shock of the injury and denial of its impact and duration, suggests some degree of acceptance of the situation (7). This reactive depression is largely secondary to the decreased self-concept and self-worth, and sexuality may positively or negatively affect and be affected by this altered sense of self (8). Alterations in body image also are significant in the overall self-concept. Berger (6) and Lindner (9) found more somatic problems with body image in impotent rather than potent spinal cord injured men. Sexual behavior is dependent on both biological and psychological factors. Social and cultural experiences, early psychosexual development, positive and negative emotional attitudes, and self-esteem all influence behavior which can affect motivation. Rusk (10) found that impotent paraplegic males are more depressed, withdrawn, and emotionally overwhelmed than those who are potent. On projective tests, Lindner (9) discovered that impotent paraplegics made fewer sexual perceptions in accordance with reality stimuli, reflecting repression and distortion of reality. This group was also less involved in vocational training, and Lindner suggests that their preoccupation with their bodies takes the time and energy that might otherwise be devoted to vocational and social pursuits. Frankel (11) believes that sex-related anxiety can be displaced to anxieties concerning other body functions which can have direct bearing on motivation and overall adjustment.
ATTITUDES AND EMOTIONS These problems of readjustment and rehabilitation are also reflected in personal and social relationships. Male paraplegic patients have expressed their anxiety of being discharged from a rehabilitation facility to return to their partners. They were apprehensive that they would not be able to cope with the demands placed on them in their male sexual roles. Interestingly, in most of these instances, the partners stated that the "demands" were the perception of the injured men alone. Discussing how spinal cord injured and able-bodied adults share similar concerns of "comfort, confidence, competence, and rela-
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tionships", Cole states that "their ability to communicate wants and feelings with their partners, their mutual willingness to experiment with sexual activities which are pleasing and not exploitive, emphasis on fantasy, a reasonable program of physical hygiene, and the knowledge that more sexuality lies within the head than between the thighs all help to set the stage for restoration of an active and satisfactory sex life" (12). Sexuality should not be first and foremost in conversation or a primary treatment goal; it can be viewed in the context of the person's total problems and losses. Initially, the individual is more concerned with survival and the disability itself. Later, the person may broach the subject if he/she feels an honest, trusting relationship has been established with one or more of the staff at the medical facility. As with most areas of health care, it is wisest for the health care professional not to defer introducing this subject. In a matter-of-fact manner, the professional can assess what the person deems as losses and what he/she is capable of doing in all areas, not only those of a sexual nature. Individuals who may be reluctant to discuss these matters with the staff might feel more comfortable amidst the camaraderie of a group discussion on the ward; this opens the door for further communication and for sharing feelings and emotions, as well as practical information. For spinal cord-injured men, sexual ability ranked fifth among their conceres, behind those of physical and financial; appearance and occupation were ranked as less important (13). Other studies indicated that the loss of sexual functioning was perceived as more upsetting to the individual than bowel and bladder control and the ability to ambulate (14,15). In contrast, Hanson and Franklin (16) report that the loss of sexual functioning ranked behind those other losses in a study of paraplegic men. Working together to increase the awareness of all areas related to sexuality and adjustment, the person with a spinal injury and staff members can assess the individual's priorities and the varying activities of sexual expression. Neurophysiologic alterations, sensory status, capacity for functional mobility, pain, rest, comfort, bowel and bladder continence, psychosocial issues, and cultural and religious aspects need to be considered. In this way, the person and/or couple can gain information and is encouraged to try other satisfying and perhaps more energy-saving modes of sexual sharing (17). "Regardless of type and degree of disability or physical condition, his(her) sexuality can be used to weld a relationship with another human being. He(she) can please a partner; he(she) can experience empathic gratification. He(she) can enjoy the excitement of stimulating the secondary erogenous zones and achieve feelings of adequacy from giving pleasure to another person" (18). Conversations with patients about sexuality and spinal cord injury have revealed several common themes - fears of abandonment, of no one wanting to be close to them, of being powerless and out of control, of missing out on the
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fun, the pleasure, and the fulfillment of the self and the partner's needs, and of having nothing to give or receive, except the vicarious enjoyment derived from the partner's pleasure. Spinal cord injury does not eliminate sexual feelings, and it does not have to eliminate sexual acts either, although altered erectile capacity is common (19). There are many ways to achieve satisfaction, and intervention by medical personnel is just as important in this area, if the person is to receive total rehabilitation. Each individual must be carefully evaluated in terms of his/her concept and attitudes of sexuality and sexual functioning.
FUNCTIONAL CAPABILITY The primary step of helping people with spinal cord injuries and their partners achieve sexual satisfaction is to determine the sexual potential of the person by ascertaining the level and extent of injury. Although the individual often tries self-assessment by trial-and-error, it is important to have a neurological examination performed to determine the segmental level and the completeness or incompleteness of the lesion. Pinprick sensory testing of the penis, scrotum, and perineal areas should be done to establish whether the lesion is complete or incomplete or if there is an absence of sacral sparing. Classification of sexual function (20-22) is similar to that of bladder function based on whether reflex activity is present or absent from the second through the fourth sacral segments of the spinal cord. However, the presence of a functioning bladder by reflex or external pressure does not imply that sexual functioning will be present or that the converse may be true. A digital rectal examination will help ascertain sexual function. Sexual capability of the majority of male patients may be appreciated by a comparison chart (20-22) of complete and incomplete upper and lower motor neuron sexual functioning (see Table 1). A sexual history of the person with a spinal cord injury is useful; within six months, or longer among the lower motor neuron group, the individual usually knows to what extent sexual functioning has returned. Erections are either reflexogenic, occurring spontaneously by reflex activity and by external stimulation, or psychogenic, produced by mental or mental and physical stimuli. The determinant in the upper motor neuron group is the amount of sensation to pinprick in the sacral segments, not the sacral sparing of "light touch only". Importance of this pinprick sensation decreases with lesions at the lumbar levels, evidenced by the psychogenic erections in people with complete somatic lesions at the lumbar dermatome levels in both upper and lower motor neuron injuries. Generally, the higher the lesion, the greater likelihood of erection, and the lower the lesion, the greater possibility of ejaculation. Attaining an erection is not as problematic as having orgasm and ejaculation (23).
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Table 1. Sexual Functionof the Person with Spinal Cord Injury~ i
Complete U p p e r Incomplete Upper CompleteL o w e r Incomplete Lower Motor Neuron Sexual MotorNeuron Sexual MotorNeuron Sexual MotorNeuron Sexual Function Function Function Function Reflexogenic erections
Reflexogenic --26% will have --83% will have erections, Depending psychogenicerections psychogenicerections on the only only incompletenessof the lesion, many persons will have psychogenic erections in additionto reflexogenic erections
~70% who attempt coitus will be successful
-85% who attempt coitus will be successful
-65% who attempt coitus will be successful
-90% who attempt coitus will be successful
Cannot ejaculate, will not have orgasm or sire children
~29% will be able to ejaculate and have an orgasm
~t7% will be able to ejaculateand have an orgasm
~60% will be able to ejaculateand have an orgasm
A few patients with lesions at Thoracic-10 and below may have psychogenic as well as reflexogenic erections, ejaculate, have an orgasm, sire children.
~6% will sire children
~5% can sire children
~10% can sire children
a(20-22)
Being capable of reflexogenic erections does not insure successful coitus. Spontaneous reflexogenic erections might occur at any time but may not be elicited when the partner is available and the time is desirable. Reflexogenic erections attained by external stimuli may be of too brief a duration for completion of successful coitus, "successful" indicating orgasm for the partner, not just intromission. Flexion spasticity of the lower extremities may induce erections in some people but may cause detumescence in others with upper motor neuron injuries. Those with lower motor neuron lesions may achieve psychogenic erections, but the penis must remain f i n n enough for intromission. Heretofore, sexual function of the spinal cord-injured male has been primarily addressed. In reviewing the literature, there is a dearth of material on the sexual function of women with spinal cord injuries. This might be attributed to the wealth of research subjects available among men between the ages of 18-25 who have a greater incidence of the 10,000 new spinal cord injuries
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yearly in the United States. Women who have sustained spinal cord injuries and are of child-bearing age usually regain their menstrual cycle, and almost 50% never miss a menstrual period (12). Vaginal and clitoral orgasms may not be possible because of sensory difficulties, but women are still capable of sexual satisfaction, including through secondary erogenous zones (24). Studies by Weiss and Diamond (5) suggest that sexual activity continues or increases following disability for a majority of women, and the incidence of extramarital partners increases, regardless of sexual activity with the husband. They also found that women were less disturbed than men in maintaining their sexuality and roles and that sexual fantasy and intellectual interests were not changed following the injury. In 80% of their fantasies, the women saw themselves as being able-bodied. Maintaining a preinjury body image is not uncommon in individuals whose body appears whole (25). Men, too, have given evidence of visualizing an unrealistic body image in their dreams (26). Ryan hypothesized that since the new realistic body image would be anxiety-provoking, individuals are resistant to change their already formed body image. Paraplegic women can conceive, carry to full term, and deliver normal children, most often through vaginal deliveries (12,27). Since fertility generally is unaffected, contraception needs to be considered. 'q'he increased incidence of venous thrombosis associated with oral contraceptives is enhanced by the propensity for venous stasis and thrombosis in the paralyzed limbs" (12). Intrauterine contraceptive devices may be problematic in light of impaired sensation to pain, and the woman with upper extremity weakness or paralysis may require assistance to insert a vaginal diaphragm. In men, however, fertility is low after cord injury. Causes for this low fertility are lack of erection or ejaculation (those having erections may not be able to maintain it long enough to complete coitus) and retroejaculation into the bladder, where an acidic urine pH causes sperm motility to be reduced or lost. Another cause, common after spinal cord trauma, is testicular atrophy with the absence of spermatogenesis, whereby an insufficient number of sperm or sperm with decreased motility in the ejaculate are produced. Since greater than 90% of men with complete spinal cord injuries have significant problems with fertility, dependent upon the level of injury, Sarkarati, Rossier, and Fam (28) have used vibratory and electroejaculation techniques to try and emit semen to improve fertilization. They found that semen quality and motility, although not conducive for fertilization during the initial six months post-injury, improved after that period. Repeated rectal probe electrostimulation has demonstrated good potential for sperm production for artificial insemination (29). Siosteen (30) has been attempting to obtain semen in men with spinal cord injury by intrathecal injections, electroejaculation, and vibrator stimulation in an effort to improve fertility. At this early point, it appears that successive long-term ejaculation improves the quality of the sperm, but much more research is needed.
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Problems of cosmesis, esthetics, and vanity are also important to consider. Self-consciousness about the body may result in a couple avoiding any sexual contact. If the body image is so acutely altered, people may doubt if their sexual expression could even come close to the relations they previously enjoyed (12). Lower extremity spasms, contractures, decubiti, and urinary tract infections may add to the difficulties of coitus. Flexion spasticity of the lower extremities may induce erections in some people but may cause detumescence in others with upper motor neuron injuries. Spastic or flaccid paralysis may result in different degrees of immobility and problems with positioning. With both flaccid and spastic paralysis, urine may be expressed from both men and women during coitus.
R E A D J U S T M E N T A N D REHABILITATION
A distinction has been made between sex, with its physiological capacity for intercourse, and sexuality, incorporating attitudes that influence all aspects of an individual, including behavior and relationships. People are sexual beings whether they have spinal cord injuries or are unimpaired. After sexual potential has been assessed, the physician should carefully guard his/her prognosis, since there are always exceptions. Time and attempts at coitus will yield the best information of the person's potential; the return of sexual functioning cannot be accurately assessed at the onset of injury. Total rehabilitation includes sexual rehabilitation. Mooney, Cole, and Chilgren (31) believe that sexual expression enhances communication, self-esteem, and personal pleasure, all very important for people with spinal cord injuries who may forsake sexual activities due to embarrassment, self-consciousness, and disability. They contend that recognition of sexual adjustment may begin to lift the isolation they found among spinal cord-injured individuals. "A major obstacle to reengaging the world in a meaningful or competitive fashion is the energy drain of feeling castrated because they are considered sexually inept" (31). Recalling Lindner's (9) hypothesis that the intense preoccupation with their bodies experienced by impotent men with paraplegia left little time and energy for vocational and social pursuits, it may be suggested that some spinal cord-injured individuals might be able to devote energies to other areas if sexual confidence is improved. If people with spinal cord injuries are going to succeed at striving for the possibilities of sexual fulfillment, greater acceptance and adjustment to their disabilities, and an altered way of life, there must be a change of attitudes,
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increased information, and education. Sexual identity, self-concept, and selfworth are so strongly linked that if one falters, the other facets of the personality may suffer. It then becomes larger than a problem of sexual inadequacy and may become a problem of personality inadequacy as well. There are techniques available to achieve a satisfactory sex life, and the person with a spinal cord injury should be made aware of them. Since people with incomplete injuries may have some body function and feeling below the level of the injury, erections may be stimulated by sexual feelings. Others' erections, however, may be dependent on reflex stimulation, such as manual massage of the penis, pulling the catheter, pulling the external urinary receptacle, fellatio and cunnilingus, use of a vibrator, introducing the penis into the partner and rubbing up and down on it so that friction may trigger the reflex, pulling at the pubic hair, placing a finger in the rectum, or slapping the thigh. For some men with injuries low on the spine who may be able to walk with aids but not able to achieve erections, other methods can be tried to satisfy sexual partners, such as the stuffing technique, in which the partner "stuffs" the flaccid penis into his/her body and manipulates an erection (31). Some couples have found that an artificial phallus is helpful, but for others, the introduction of "equipment" might detract from the closeness and tenderness of the relationship. An alternative to an artificial phallus is the surgical implantation of a penile prosthesis, but this, too, is not always problemfree. Spinal cord-injured men with penile prostheses have experienced a greater rate of erosion, infection, and an overall complication rate of 16%, perhaps secondary to altered sensation and chronic bacteria in the urine (34). Although implantation of penile prostheses in individuals with spinal cord injuries has been beneficial for erectile dysfunction, Collins and Hackler (35) report a decrease in the use of these implants in their facility, secondary to the complication rate, improvement of external devices, and the advent of other techniques, such as penile intracorporeal injections and constriction suction devices. Due to these high complication rates, Green and Sloan (36) believe that careful evaluation and selection of candidates is essential and that self-esteem, motivation, and attention to care in activities of daily living must be considered. Utilizing five different types of semi-rigid and inflatable implants, they studied the combination of early psychosexual counseling during the acute phase of rehabilitation and surgical implantation of penile prostheses, nine to twelve months post-injury. Counseling and education in their program involves the emotional aspects of sexuality, alternatives to intercourse for sexual activities, and reassessment of body image, pertaining to sexuality. This combined approach has produced favorable results. Another alternative to aid in the achievement of erections is the recently developed Synergist erection system, an external device for management of impotence. Simple to use, safe, effective, and noninvasive, this device was
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rated by spinal cord-injured men and their partners as very good to excellent in effectiveness and satisfaction with their sex lives (37). Foreplay techniques can increase intimacy and decrease sexual frustration if the man is able to have an erection but unable to sustain it long enough to complete coitus. All efforts to empty the bladder before intercourse should be made. The upper motor neuron bladder may empty reflexly, and the pressure of the partner on the lower motor neuron bladder may cause the bladder to empty into the partner during coitus, a potentially offensive but not pathological situation. Manual pressure externally on the bladder, such as the Cred6 method, is helpful, as well as having a receptacle within reach to avoid accidents. Urinary catheters may be removed for coitus or may be left in place during intromission, folded over the penis in a man or moved aside in a woman. Some men prefer to leave the catheter in place and use a condom; others are comfortable utilizing a longer tube draining into a receptacle on the floor beside the bed instead of a shorter catheter draining into the urinary leg-bag. There are many other techniques to consider, such as positional variations, secondary erogenous zones, and noncoital sexual relations, which can be offered by health care professionals and other people with spinal cord injuries. It is imperative to be cognizant that some activities may be distasteful to one or both partners because of religious, moral, or other personal reasons. Although time and practice are important, the significance of the couple communicating, sharing, and realizing a meaningful relationship cannot be overstated.
ROLE OF THE HEALTH CARE PROFESSIONAL
To remedy and prevent these circumstances, Sexual Attitude Reassessment Workshops have been held at centers throughout the country (32), with significant beneficial effects on spinal cord-injured people, their partners, and rehabilitation professionals; ninety-one percent of the spinal cord-injured people and their partners completing an evaluation of such a program said they would recommend the workshop program to others like themselves. Myths saying that people with physical disabilities have no sexual needs or desires or have excessive or perverted needs must be dispelled, along with the fears and taboos which surround sex. Group discussions among patients, partners, and patients and partners have also proven helpful, under the leadership of someone skilled in interpersonal relations, competent in knowledge of the problems, and sensitive to the groups' concerns and feelings. Counseling that addresses sexuality, as well as practical considerations, is needed. Individual or group counseling programs must consider the psychological and social problems and the ethnic and cultural differences involved (33). Sexuality, a very significant aspect of being human, is a legitimate part of
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the total rehabilitation of the individual and needs to be addressed. Nordqvist (38) reports that counselors for people with physical disabilities, as opposed to general sex counselors, must be more patient and less threatening when introducing sexual questions with their clients. Despite special counseling services being offered (15,39), resistance and misunderstandings among professionals continue. Comfort (40) suggests that a physician who does not project a positive attitude toward sexuality should refer the patient to a professional who is better suited for sexual counseling. Although 65% of spinal cord-injured men in Hetrick's (13) study reported that they had not talked about their sexuality with anybody, 84% had not even discussed sexuality with their physicians. Clients are likely to approach anyone on the professional staff with whom they feel comfortable about sensitive issues, such as sexuality and sexual function (10), so all staff must be educated to deal with these issues. In a national survey of occupational therapists and rehabilitation nurses regarding involvement in sexuality counseling for patients with spinal cord injuries (41), there were incongruencies between that which was done in practice and the recommendations cited in the literature. Providing information about health and the alterations in body structure and function can help support the individual and aid in developing coping skills. Health care professionals can educate the individual about sexuality and sexual behaviors in the same manner as they teach mobility, activities of daily living, and other important rehabilitative skills. This intervention can enhance sexual adjustment and overall acceptance and adjustment to spinal cord injury. REFERENCES t. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13.
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