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Journal of Sex & Marital Therapy Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/usmt20

Sexuality for Women With Spinal Cord Injury a

b

a

Jackie D. Cramp , Frédérique J. Courtois & David S. Ditor a

Department of Kinesiology, Brock University, St. Catharines, Ontario, Canada b

Department of Sexology, University of Quebec, Montreal, Quebec, Canada Accepted author version posted online: 10 Dec 2013.Published online: 11 Mar 2014.

Click for updates To cite this article: Jackie D. Cramp, Frédérique J. Courtois & David S. Ditor (2015) Sexuality for Women With Spinal Cord Injury, Journal of Sex & Marital Therapy, 41:3, 238-253, DOI: 10.1080/0092623X.2013.869777 To link to this article: http://dx.doi.org/10.1080/0092623X.2013.869777

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JOURNAL OF SEX & MARITAL THERAPY, 41(3), 238–253, 2015 C Taylor & Francis Group, LLC Copyright  ISSN: 0092-623X print / 1521-0715 online DOI: 10.1080/0092623X.2013.869777

Sexuality for Women With Spinal Cord Injury Jackie D. Cramp Department of Kinesiology, Brock University, St. Catharines, Ontario, Canada

Fr´ed´erique J. Courtois Downloaded by [New York University] at 05:20 20 May 2015

Department of Sexology, University of Quebec, Montreal, Quebec, Canada

David S. Ditor Department of Kinesiology, Brock University, St. Catharines, Ontario, Canada

The authors conducted a review of the literature on women’s sexuality after spinal cord injury, including studies from 1990 to 2011 retrieved from PubMed. Several facets of a woman’s sexuality are negatively affected by after spinal cord injury, and consequently, sexual satisfaction has been shown to decrease, which also negatively affects quality of life. Neurogenic bladder is common after spinal cord injury, and the resulting urinary incontinence is a top therapeutic priority of this population. To improve sexual satisfaction and quality of life for women with spinal cord injury, future research needs to explore the effects of urinary incontinence on various aspects of sexuality.

INTRODUCTION Traumatic spinal cord injury (SCI) most commonly occurs in young adults at a point in their lives when sexual activity levels and reproductive capacity are at their peak (Reitz et al., 2004). Unfortunately, sexuality after SCI is a highly overlooked topic, and there is noticeably more information available in this area on men with SCI than on women with SCI (Nygaard, Bartscht, & Cole, 1990). Until this point, the primary focus of literature involving the sexuality of women with SCI has been predominantly on reproductive functioning. Thus, it appears as though a woman’s sexuality is often viewed only as her ability to reproduce (Charlifue, Gerhart, Menter, Whiteneck, & Manley, 1992; Singh & Sharma, 2005; Tepper, Whipple, Richards, & Komisaruk, 2001). This has resulted in an assumption that a woman’s sexuality after SCI must, like her fertility, be unaffected. Singh and Sharma (2005) concluded that although a woman’s sexual function after SCI may be comparable to that of an able-bodied woman, women with SCI do frequently experience sexual difficulties and obstacles both related and unrelated to child bearing.

Address correspondence to David S. Ditor, Department of Kinesiology, Brock University, 500 Glenridge Avenue, St. Catharines, Ontario, L2S 3A1, Canada. E-mail: [email protected]

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This article aimed to provide an overview of the current literature on women’s sexuality after SCI, and to highlight an aspect even more overlooked—the effect that urinary incontinence resulting from SCI may have on sexuality.

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METHOD A literature search was conducted on PubMed using the terms spinal cord injury, women, and sexuality which returned 170 articles. Articles were excluded from this review if they were published before 1990, considered only male sexuality, were regarding only fertility or reproductive issues, were not available in full text, and were not written in English. Articles were included if they were published in 1990 or more recently, had a term related to sexuality or sexual function in the title, were written in English, and were available in full text. Forty articles were accepted and are included in this review.

RESULTS Sexuality A number of issues related to sexuality are in some way affected by SCI. A woman’s relationships, sexual desires, frequency of participation in sexual activities, the types of sexual activities she participates in, stimulation and arousal, orgasm and sexual satisfaction, as well as psychological influences on image and esteem have all been shown to be affected by SCI, and the effects of SCI on sexuality and sexual function in turn affect quality of life. Furthermore, there may also be a connection between urinary incontinence resulting from SCI and sexuality. In the following section, we describe each of these factors in more detail. Relationships Spinal cord injury and its related consequences have a greater effect on the marital status of women than men (Singh & Sharma, 2005), and the marriage rate is considerably lower for women with SCI than for men with SCI or able-bodied individuals (Pentland et al., 2002). Eighty-six percent of the women in Singh and Sharma’s (2005) study who were not married wished to, but only half could find a partner. The women who did marry were of a higher socioeconomic status, highly educated, and well adjusted to their disability. Therefore, it appears as though individuals who reduce the effect of their disability on potential partners become more attractive than do those who become dependent on others (Milligan & Neufeldt, 1998). Divorce and separation are legitimate concerns for individuals with SCI, especially for women; divorce rates after SCI are almost double those of the able-bodied population (Charlifue et al., 1992). Furthermore, Tepper and colleagues (2001) revealed that a number of women included in their study who were either living with their partners or married at the time of their injuries considered SCI to play a key role in ending their relationships. Table 1 summarizes the literature regarding the relationship status of women with SCI.

240

Note. SCI = spinal cord injury.

Tepper et al. (2001)

Taleporos et al. (2002)

Men: 191 Women: 65 Men: 0 Women: 40

Men: 0 Women: 30 Men: 538 1196 (with Women: disability: 658 748, without disability: 448) 15 Men: 0 Women: 15

40

Pentland et al. (2002) 30

Singh & Sharma (2005)

Number of men and women

Men: 0 1,039 (with Women: SCI: 532, 1,039 without SCI: 507)

Elfstrom et al. (2005) 256

Kreuter et al. (2008)

Study

Number of participants Type of injury

Most common injury: SCI (23%)

Complete SCI: T6-L2

Mean age: 36.39

Mean age: 37

Mean age: 29.2 SCI: 10 tetraplegic, 30 paraplegic, 70% incomplete, 30% complete Mean age: 50 SCI

Mean age with SCI: 182 tetraplegic, disability: 336 45.1 Mean paraplegic, age without 182 disability: 44 complete, 326 incomplete Mean age: 43.9 SCI

Age (years)

6

Mean age at injury: 25 years Range: 2–27 years

1

Most often more than With SCI: 19 years (45%) 47% Without SCI: 30%

Mean duration: 12 years

Mean duration: 6.2 years

9

With SCI: 53% Without SCI: 70%

15

5

8 separated, divorced, or widowed Not stated

116 single, divorced, or widowed At injury: 0 At study: 3 divorced and 3 widowed

140 116 single, divorced, or widowed At injury: 7 At At injury: 33 At study: 4 study: 30

Mean duration: 8.9 years

Separated or divorced

193 with SCI With SCI: 200 With SCI: 332 separated Without SCI: 388 Without after injury SCI at injury: 359 SCI: 119 39% blamed SCI at study: 332 SCI at injury injury: 172 SCI at study: 200

Married or in a committed relationship

Mean duration: 13.3 years

Duration since injury Single

TABLE 1 Relationship Status of Women With Spinal Cord Injury

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Sexual Desire Women’s sexual desire has been found to decrease after SCI in a number of previous research studies (Benevento & Sipski, 2002; Kreuter, Si¨osteen, & Biering-Sørensen, 2008; Reitz et al., 2004). For example, Charlifue and colleagues (1992) reported that among 231 women with SCI, 46% rated sex to be less important after their injury than before. Likewise, Lysberg and Severinsson (2003) found that 25% of participants said that sexuality was less important after the injury than before. Sipski and Alexander (1993) stated that only 20% of women without SCI reported having levels of sexual desire that could be described as low to none, compared with 44% of women with SCI. In addition, Kreuter and colleagues (2008) found that 51% of their participants felt that the importance of sex had decreased since their injuries. Regarding the relation between sexual function and desire, the women with preserved sensations in the genital region described sexual activity to be more important than did those who experienced decreased or absent genital sensation. Although sexual desire seems to typically decrease after SCI, a large number of participants (72.5%) in the study by Singh and Sharma (2005) conveyed that they had an interest in sex, and that they understood the importance of engaging in sexual activity after SCI (87.5%). Despite this, 65% still reported a decrease in their desire for sex. In contrast, some studies have shown a continued importance of sexuality after SCI. For example, White, Rintala, Hart, and Fuhrer (1993) found that 72% of their participants had reported engaging in sexual intercourse since the injury. Furthermore, Kreuter and colleagues (2008) found that 38% of the women with SCI in their study reported having “great sexual desires,” while Reitz and colleagues (2004) reported that of 16 women with SCI, 50% rated sexual desire as high. When compared with the general population, individuals with SCI are, to some extent, less sexually active, but the numbers derived from the research previously presented clearly demonstrate that the SCI population is not nonsexual and that women remain interested in sex after injury, especially those women who have some amount of preserved genital sensation. Many women continue to understand the importance of sex in their relationships and in their lives. Frequency The frequency of sexual activity is also often reduced in women with SCI (Charlifue et al., 1992; Kreuter et al., 2008; Reitz et al., 2004). In the 13 cases of women with SCI that Si¨osteen, Lundqvist, Blomstrand, Sullivan, and Sullivan (1990) investigated, the authors found that none reported an increase in frequency of sexual activity, 50% reported no change, 33% reported a decrease, and 17% became abstinent. Lysberg and Severinsson (2003) reported that 25% of their participants had not developed a sex life after injury, and Reitz and colleagues (2004) found that only 37.4% of their female participants had engaged in sexual intercourse since their injuries. One possible explanation for the decreased frequency of sexual intercourse, as well as a decrease in desire could be due to a purposive shutting-out of sexuality by women with SCI. Tepper and colleagues (2001) found in their phenomenological study that women “shut down” their sexuality because of their belief that they would no longer be capable of experiencing sexual pleasure given the decreased or absent sensation in their genital area. If women believe that they will not feel pleasure from sexual activities, desire—and, therefore, frequency—may be affected. Another possible reason for the decrease in frequency of sexual activities in women with SCI is the common reduction in independence and social contacts. Hicken, Putzke, and Richards (2001) compared two groups

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of individuals with SCI matched on age, education, sex, race, and lesion level on a number of outcome scales. One group was bladder and bowel dependent, and the other group was bladder and bowel independent. They found that bladder- or bowel-dependent individuals had initiated fewer social contacts with strangers than did those who were independent. Without making new contacts, the individual will not be meeting any new potential sexual partners, and, as a result, the frequency of sexual activity one participates in may be lower. Difficulty adjusting to body changes that one may experience in appearance and function as a result of SCI may also have a negative effect on the frequency of sexual activities. Difficulty adjusting may also increase one’s fear of rejection by a potential partner (Bregman & Hadley, 1976). If the individual has not yet themselves accepted their injury, they will most likely have difficulty expecting others to accept them. Consequently, he or she may avoid these types of situations all together to avert feeling rejected. Decreases in mobility—and, thus, a fear of no longer being able to perform sexual activities the same way one did before his or her injury—may also cause an individual with SCI to avoid sexual activities. Last, the public stigma that individuals with disability are unattractive, or are not sexual beings may also contribute to the decreased frequency of participation in sexual activities for this population. Types of Activities There may be little difference in the types of sexual activities that women participate in before and after SCI (Charlifue et al., 1992; Sipski & Alexander, 1993), although certain sexual activities may be preferred after injury and include kissing, hugging, touching, and caressing (Anderson, Borisoff, Johnson, Stiens, & Elliott, 2007; Kreuter et al., 2008; Reiz et al., 2004; Sipski & Alexander, 1993). Genital caressing and sexual intercourse are likely to become less important for women after SCI, but sexual fantasies and thoughts about past sexual experiences before the injury, as well as being aware of all of one’s senses becomes more important (Kreuter et al., 2008). It is valuable for individuals with SCI to explore new types of sexual activities that will satisfy themselves and their partners, such as stimulating new and effective erogenous zones such as the ear lobe (Kreuter et al., 2008; Lysberg & Severinsson, 2003). Of the sexually active women with SCI in the study by Kreuter and colleagues (2008), 21% felt that their sexual repertoire was more varied after their respective injuries, 37% felt that it had not changed, and 42% felt that their sexual repertoires had dwindled. Ten of the 16 women in the Reitz and colleagues (2004) study stated that they participated in sexual activity on a regular basis. For 3 of these women, sexual activity involved masturbation; for 7, it meant kissing and caressing; and for 6, it entailed sexual intercourse. Stimulation and Arousal The ability for a woman with SCI to become sexually aroused and display the physiological responses that are commonly associated with sexual arousal seems to occur less frequently after injury, but also seems to depend on the lesion level and completeness and on the type of stimulation that is used to induce the response. Early studies indicate that the lesion level determines whether women with SCI can maintain reflexogenic (i.e., genital) or psychogenic stimulation depending on the integrity of the sacral or thoracolumbar innervation respectively (B´erard, 1989; Sipski, 1991; Sipski, Alexander, & Rosen, 1995b, 1997; Whipple, Gerdes, &

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Komisaruk, 1996). B´erard (1989) in a series of interviews concluded that women with lesions located above sacral innervation maintained vaginal congestion to genital stimulation while those with lesions damaging sacral innervation (conus terminalis or cauda equina lesions) maintained vaginal congestion to psychogenic stimulation. Sipski and colleagues (1995b) further demonstrated that women with complete SCI above T5 did not show any change in vaginal pulse amplitude in response to erotic stimulation (as opposed to able-bodied controls), but showed a significant increase in vaginal pulse amplitude during genital stimulation (not significantly different than controls). Sipski and colleagues (1997) also demonstrated that women with incomplete lesions and preserving the pinprick sensations in the T11-L2 dermatomes reported better perception of their sexual arousal than those who had lost pinprick sensations in these territories. Whipple and colleagues (1996) used vaginal cervical stimulation to assess pain and sexual sensations in women with SCI. In their first study on sexual arousal, they showed that only those women with complete lesions below T10 exhibited a significant increase in blood pressure during vaginal cervical stimulation, giving support to the hypogastric nerve mediation of cervico-vaginal stimulation (Whipple et al., 1996). In a second study, they showed that women with complete lesions below T10, and unexpectantly women with complete lesions above T10 as well, could maintain a perception of pain, despite the loss of tactile sensations. The authors concluded for the first time that another pathway running through the vagus nerve could bypass the lesion and project sensory information to the brain (Komisaruk, Gerdes, & Whipple, 1997). Altogether, these studies suggest that sexual responses in women with SCI can be initiated, depending on the lesion level and completeness, by genital or psychogenic or cervico-vaginal stimulation, and mediated through a sacral, or thoracolumbar or vagus nerve pathway. Other studies, more generally reported that more than half (53%) of women mentioned that they were less likely to become sexually aroused since their injuries, but those with complete injuries reported the highest amount of change in their ability to become sexually aroused (Kreuter et al., 2008), which is consistent with the reflex mediation of sexual responses. Reitz and colleagues (2004) similarly showed that physiological responses (lubrication and clitoral swelling) in women with cervical and thoracic lesions always resulted from genital stimulation in 60% of the women participating in sexual activities, most of the time in 20%, sometimes in 10%, and rarely in 10%. Physiological responses resulting from psychogenic stimulation (audio and visual sources or imagination) also occurred in 50% of the women surveyed. Orgasm Similar to sexual arousal, the capacity for orgasm in women with SCI appears to differ based on the level and completeness of the spinal injury. Sipski and colleagues (1995b) found that 52% of women with lesions located above T5 were able to achieve orgasm through clitoral stimulation (by self or partner, fingers or vibrator, with or without lubricant). Nine out of 14 (64%) women with incomplete lesions reached orgasm, compared with 4 out of 11 women (36%) with complete lesions. In another study, Sipski, Alexander, and Rosen (2001) again reported around 50% of women being able to achieve orgasm, 59% with higher upper motor neuron lesions, but only 17% with lower motor neuron lesion affecting S2-S5. Komisaruk and colleagues (2004) and Whipple and Komisaruk (2002) reported the ability for orgasm in women with SCI with vaginal-cervical stimulation with complete lesion at or above T10 and confirmed the perceptual experience of

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orgasm with functional magnetic resonance imaging. These findings indicate that intact sacral innervation and perhaps intact TL innervation is required to convey sensory input to trigger orgasm, and that the perception of orgasm can be achieved through various sensory pathways including possible vagus nerve afferents running from the genitals to the brain (Komisaruk et al., 2004; Whipple & Komisaruk, 2002). Si¨osteen and colleagues (1990) further compared the experience of orgasm in 13 women pre and post injury and found that 68% experienced orgasm despite their injury, but 25% of them reported a decreased sensation of orgasm while 33% reported no change (none reported improved orgasm). Similar results have been shown elsewhere (Benevento & Sipski, 2002; Kreuter et al., 2008; Tepper et al., 2001). Likewise, Reitz and colleagues (2004) found that of the 16 women in their study, 62% still were still able to experience orgasm with three women often experiencing orgasm, three occasionally experiencing orgasm, and the remaining 10 never experiencing an orgasm since their respective injuries (only 10 had sex after injury).

Satisfaction Women with SCI will typically experience a decrease in sexual satisfaction after injury (Kreuter et al., 2008; Kreuter, Taft, Si¨osteen, & Biering-Sørensen, 2011; Reitz et al., 2004). Reitz and colleagues (2004) reported that 25% of the women in their study were completely satisfied sexually, 13% were sometimes satisfied, 31% were rarely satisfied, and 31% were never satisfied. Overall, in the study by Singh and Sharma (2005), 22 of the 40 women with SCI stated that they were satisfied with their sexual experiences after injury; however, 19 women described their sexual lives after injury as worse than before their respective injuries. Si¨osteen and colleagues (1990) found that the level and completeness of injury were not related to levels of sexual satisfaction and that issues other than the classification of injury must therefore contribute to sexual satisfaction. Kreuter and colleagues (2008) discovered that sexual satisfaction was reported in 51% of women with SCI compared with the 62% reported by a cohort of able-bodied women. Of further interest was that the women with SCI reported having much higher levels of sexual satisfaction before their respective injuries (83%) than did the controls without SCI (62%). The authors suggest that this could be the result of overestimation or memory bias of their sexual lives before the women incurred their respective injuries. Tables 2 and 3 summarize the literature regarding the various aspects of sexual function for women with SCI discussed earlier.

Quality of Life The ability to make adaptations to one’s sexual life after SCI is closely linked to quality of life (Si¨osteen et al., 1990), and the outcome of one’s overall life adjustment is highly influenced by the extent to which one’s sexual rehabilitation is successful (Reitz et al., 2004). Having an active and satisfying sexual life after injury is associated with improved quality of life and overall life adjustment (Si¨osteen et al., 1990).

245

Great sexual desire in 38% of participants Decreases in 65% of participants

Kreuter et al. (2008)

Low to none in 44% of participants Not stated Not stated Not stated

Lysberg & Severinsson (2003)

Sipski & Alexander (1993) White et al. (1993)

Charlifue et al. (1992) Siosteen et al. (1990)

Note. SCI = spinal cord injury.

High: 50%, moderate: 31%, low/absent: 19%; unchanged: 31%, slightly lower: 31%, considerably lower: 38% Not stated

Reitz et al. (2004)

Singh & Sharma (2005)

Sexual desire

Study

Less important for 46% Not stated

Less important for 25%, unchanged for 50% Not stated Not stated

Not stated

51% had decreases in interest, 40% unchanged, 8% increased 73% were interested & 88% understood the importance

Interest/ importance

TABLE 2 Aspects of Sexual Function for Women After Spinal Cord Injury

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Not stated 72% had participated in sexual intercourse Not stated 0% increased frequency, 50% no change, 33% decreased, 17% abstinent

25% had not developed a sexual life

80% had participated in some form of sexual activity 60% had been in a physical relationship, 30% no form of physical activity 62.5% had had sexual intercourse, 37.5% had not

Participation/ frequency

246 In 21% of participants, sexual repertoire was more varied, 37% not changed, 42% dwindled Not stated

Kreuter et al. (2008)

Not stated

Not stated

Not stated

Benevento & Sipski (2002)

Tepper et al. (2001)

Siosteen et al. (2001)

Note. SCI = spinal cord injury.

For 19% the type of sexual activity was masturbation, 44% kissing & caressing, 37% sexual intercourse

Reitz et al. (2004)

Singh & Sharma (2005)

Types of activities

Study

Not stated

Not stated

60% still able to experience orgasm (30% often, 30% occasionally, 40% never)

Physiological responses to sexual stimulation: always for 60%, sometimes for 10% and rarely for 10%; to central stimulation: 50% reported responses Not stated

Orgasm in a lab setting: 100% of women without SCI, 52% with SCI 87% had orgasms before injury, 53% had orgasms after 0% improved, 33% no change, 25% decreased sensation, 42% none

Not stated

Orgasm most of the time: 42% of women without SCI, 23% with SCI

53% were less likely to become sexually aroused

Not stated

Orgasm

Stimulation/arousal

TABLE 3 Aspects of Sexual Function for Women After Spinal Cord Injury

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Not stated

Not stated

Not stated

Sexually satisfied: 51% of women with SCI, 83% before injury, 62% able bodied 55% are satisfied, but 48% consider their sex lives worse than before SCI 25% completely, 13% sometimes, 31% rarely, 31% never satisfied

Sexual satisfaction

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Psychopathology, Image, Esteem and Satisfaction How one views his or her body, as well as how one believes others view his or her body is incredibly important to sexuality (Kreuter et al., 2008). Psychosocial issues relating to sexuality and subjective measures including body image and sexual desire may be more important to women with SCI and have a greater effect on sexuality than physical concerns and preserved sexual abilities (Reitz et al., 2004; White et al., 1993). When comparing women with SCI to age matched controls, Kreuter and colleagues (2008) found that 62% of their controls considered themselves to be “rather or very attractive,” whereas only 41% of the women with SCI felt so about themselves. This bias seems to be injury-induced, as 74% or women with SCI had considered themselves to be “rather or very attractive” women before the injury. Likewise, one third of the women with SCI felt that other people considered them to be less attractive women as a result of their injuries. More of the women with complete injuries felt that they were not at all attractive when compared to the number of women with incomplete injuries. Women with SCI may have improvements to their feelings of self-esteem after SCI more promptly than to their sexual-esteem as stated by Tepper and colleagues (2001), and the delay in sexual esteem can also negatively affect one’s sexual satisfaction. Tepper and colleagues (2001) suggesed that increases in sexual-esteem often precede sexual pleasure and orgasm after SCI. A study involving urinary diversion and catheterization through an umbilical stoma found that as the sexually active women began to feel happier with their body image the frequency of sexual intercourse increased (Moreno et al., 1995). In addition, the women who were becoming more sexually active also reported higher subjective levels of sexual pleasure. Increased levels of confidence and esteem resulting from an improvement in body image may allow women with SCI to enjoy their sexual experiences more freely, and thus, result in increased levels of sexual satisfaction. White and colleagues (1993) assessed multiple areas of concern for women after SCI. Of the 17 areas identified, sexual satisfaction and feelings of unattractiveness were ranked as the third (not satisfying a partner), fourth (feeling sexually unattractive), fifth (being viewed as sexually unattractive by others), and sixth (not being personally satisfied) most concerning areas. Of the women in the study, 52% expressed concerns regarding an inability to sexually satisfy their partner, 51% of the women felt sexually unattractive, 51% of the women were also concerned that others would find them sexually unattractive, and 45% of the women displayed concerns that they were not sexually satisfied enough themselves. Furthermore, the women presented the life area sex life to be relatively unimportant by ranking it 10th in importance out of 12 possible areas. Perhaps if their levels of sexual satisfaction were higher, they would rank the importance of their sex lives as higher as well. Taleporos, Dip, and McCabe (2002) measured depression, stress and anxiety, self-esteem, sexual esteem, body esteem, and sexual satisfaction in 1,196 participants comprised of both men and women, with and without disabilities. It was discovered that high levels of body esteem and sexual satisfaction in participants with physical disabilities were associated with higher levels of self-esteem and lower levels of depression. Women with physical disabilities in particular demonstrated a stronger link between body esteem and self-esteem possibly because of the pressure for women to conform to certain societal standards and expectations of beauty. Overall, it

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was concluded that body esteem, sexual-esteem, and sexual satisfaction were robustly influential on self-esteem for individuals with physical disabilities. Furthermore, sexual satisfaction and body esteem were associated with lower levels of depression. Last, it was concluded that sexual well-being and body esteem had a stronger effect on psychological well-being for the participants with physical disabilities than for the participants who were able-bodied. Therefore, it appears as though some of the issues relating to depression and lower levels of self-esteem for people with disabilities are controlled by their negative feelings about their bodies and their sexual lives. Stress and anxiety did not show the same type of relationship with sexual satisfaction, sexual-esteem, and body esteem as shown for depression and self-esteem. Verschuren and colleagues (2010) stated that body image may be negatively affected by chronic diseases, which would include SCI, by causing changes to one’s appearance that may be regarded by others as abnormal, as well as a loss of control over one’s own movements and basic functions. Often, a loss of control over one’s own movements whether it be the inability to inhibit unwanted movements such as spasticity, or an inability to produce a desired movement resulting from paralysis will accompany SCI. A loss of mastery over one’s basic functions, such as bladder and bowel control, is also commonly experienced after SCI and such incontinence can certainly have a negative effect on body image. Table 4 summarizes the literature regarding quality of life, esteem, and image for women after SCI. Effect on Caregiver Role The ability of a woman with SCI to carry out the responsibilities associated with her traditional caregiver role in a relationship may be altered after injury, and her partner may have to step in to this position. It is possible that this could negatively affect the way she feels about her contributions to the relationship as a woman, and her partner may not be accepting of the caregiver role that he is now required to fulfil. Potential Effect of Urinary Incontinence on Sexuality Urinary Incontinence a common consequence of SCI. After SCI, two types of neurogenic bladder exist, those being overactive and hypotonic bladders (Delehanty & Stravino, 1970; Karsenty et al., 2008). An overactive bladder, which is associated with an upper motor neuron lesion, contracts at a very low volume and is often accompanied by bladder-sphincter dyssynergia, which is responsible for spasms, closing the output of urine and triggering reflux. Under severe conditions, urinary reflux can reach the kidneys and cause major health consequences. On the contrary, a hypotonic bladder, which is associated with a lower motor neuron lesion, fills up with large volumes of urine without contracting and ultimately leads to urinary incontinence as a result of an overflow of urine from the bladder. Urinary incontinence may affect sexual activity. Women with overactive bladders may experience incontinence as orgasm has been shown to be associated with muscle contractions (Delehanty & Stravino, 1970; Whipple & Kmisaruk, 1997). Hence, upon bladder contractions (among the overall perineal muscle contraction) urinary incontinence may occur. Women with hypotonic bladders on the other hand may experience incontinence that is associated with certain movements and positions during intercourse that place pressure on the bladder (Sipski et al., 2001).

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TABLE 4 Quality of Life, Esteem, and Image for Women After Spinal Cord Injury Study

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Kreuter et al. (2008)

Measures ∗ Questionnaire

to describe aspects of sexual life for women with SCI

Findings ∗ 62%

of controls and 41% of women with SCI considered themselves “rather acttractive” or “very attractive” ∗ 33% felt others considered them less attractive women as a result of their injuries ∗ 74% considered themselves less attractive as a result of their injuries ∗ Medical Outcomes Study 36-Item Short Form ∗ Women with SCI scored consistently lower on Middleton et al. (2007) Health Survey ∗ Moorong Self-efficacy Scale all eight domains of the 36-Item Short Form Health Survey than did the general population ∗ Women with SCI had a lower quality of life than did men with SCI ∗ Increases in body esteem and sexual esteem Taleporos et al. ∗ Short-Form Depression and Stress Scale ∗ Rosenberg Self-Esteem Scale ∗ Short-Form (2002) were associated with increased self-esteem and lower levels of depression Sexual Esteem Subscale (in the Sexuality Scale by Snell & Papini, 1989) ∗ Body Esteem Scale ∗ Women with physical disabilities had a stronger ∗ Single question about sexual satisfaction over link between body esteem and self-esteem ∗ Body esteem, sexual esteem, and sexual the past 7 months satisfaction were very influential on self-esteem ∗ Higher levels of sexual satisfaction and body esteem were associated with lower levels of depression ∗ Sexual well-being and body esteem had a stronger effect on the overall psychological well-being for those with physical disabilities than those who were able-bodied ∗ Umbilical stoma urinary diversion pre- and ∗ Women who were sexually active began to feel Moreno et al. (1995) postoperation measures happier with body image, frequency of sexual activity, and subjective levels of sexual pleasure increased ∗ Assessed 17 life areas of concern for women ∗ Sexual satisfaction and feelings of attractiveness White et al. (1993) after SCI ranked third, fourth, fifth, and sixth most concerning areas ∗ 51% felt sexually unattractive ∗ 51% were concerned that others would find them unattractive Note. SCI = spinal cord injury.

Multiple treatments and strategies are available for reducing the likelihood of incontinence. First-line treatments most often involve catheterization combined with medications (Bagi & Biering-Sørensen, 2004; Do Ngoc Thanh, Audry, & Forin, 2009; Karsenty et al., 2008; Reitt et al., 2004; Patel, Patterson, & Chapple, 2006; Patki, Hamid, Arumugam, Shah, & Craggs, 2006; Sahai, Khan, Fowler, & Dasgupta, 2005; Schurch et al., 2000; Schurch et al., 2005; Wefer et al., 2010) and if unsuccessful, a number of surgical procedures can be considered as secondline treatments (Cranidis & Nestoridis, 2000; Monti, Lara, Dutra, & Rezende De Carvalho,

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1997). However, because of the frequent occurrence of side effects resulting from anticholinergic medications (Sahai et al., 2005; Wefer et al., 2010), many patients may become noncompliant with this treatment, and, therefore, it is possible for urinary incontinence to continue to be problematic (Bagi & Biering-Sørensen, 2004; Patel et al., 2006; Patki et al., 2006; Schurch et al., 2000; Schurch et al., 2005). Individuals with SCI must be aware of the variables that affect the risk of incontinence, especially during sexual activities, such as drinking alcohol before sexual encounters, especially beer and white wine, or caffeine beverages such as coffee, tea, cola, or energetic drinks. Women should be aware that menses and urinary infections may increase the risks of incontinence. They should catheterize or void their urine just before sexual activity as sexual arousal may increase diuresis. Also, during sexual activity women may want to distinguish urinary incontinence from possible female ejaculation at orgasm.

DISCUSSION Urinary Incontinence and Sexual Function For an individual with SCI, urinary incontinence is one of the many negative consequences that may become a concern of everyday living (Reitz et al., 2004). For an adult, being incontinent is considered socially unacceptable and socially devastating (Do Ngoc Thanh et al., 2009; Horton, Chancellor, & Labatia, 2003). Sexual function is the number one therapeutic priority for many individuals after SCI (Anderson, 2004; Anderson et al., 2007), and as mentioned above, there are several concerns related to sexual function for women with SCI. Given the aforementioned variables and conditions affecting bladder function, urinary incontinence is possible and continue to be problematic especially as it relates to sexual function. Urinary incontinence has the potential to affect the various dimensions of a woman’s sexuality that have been discussed earlier. Embarrassment resulting from urinary incontinence and unpleasant feelings toward it may result in decreased sexual desire. The types of sexual activities one participates in after SCI may also be influenced by urinary incontinence as certain positions, movements, or orgasm itself (Serati, Salvatore, Uccella, Nappi, & Bolis, 2009). For example, those women with hypotonic bladders may avoid certain positions that place pressure on the bladder which, in turn, may cause leakage. Many women are most concerned about experiencing urinary incontinence while receiving oral sex, and will shy away from this sexual act altogether. The sensation felt from upcoming urination can be difficult to differentiate from the sensation that is felt during the time leading up to orgasm, or the sensation that is felt during orgasm itself for women with SCI. In some cases, this causes women to be fearful of orgasm as they are unsure if it is an orgasm that they are really feeling, or if it is urinary incontinence. Body image may also suffer as a result of urinary incontinence as being unable to control one’s bladder is often associated with infants, or older adults. Being unable to control one’s bladder may also result in other negative connotations such as having poor hygiene. Urinary incontinence may therefore influence body image, self-esteem, gender roles, relationships, seduction, sexual confidence, sexual quality of life, and sexual satisfaction, all of which can have adverse effects on quality of life. Ferreiro-Velasco and colleagues (2005) found urinary

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incontinence to be the most common problem associated with sexual activity for women after SCI. Bladder accidents were one of the reasons that women rated their sexual lives after injury to be worse than before their injuries, and Valtonen and colleagues (2006) concluded that those individuals who experienced more difficulty with urinary incontinence were less satisfied with their sexual lives. Despite the possible effects of urinary incontinence on sexuality, these topics have seldom been studied together.

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Conclusions and Recommendations It is likely that the level of lesion affects multiple components of sexuality that have been discussed in this review including relationships, desire, frequency and types of activities. However, this information is absent within existing literature and further research is required to determine how the level of lesion influences the various aspects of sexuality for women after injury. Further research is also needed to investigate the major concerns about urinary incontinence and its relation to sexual function. In doing so, future research may be able to help women with SCI better adjust to their sexual desires, body image, and sexual and self-esteem after injury, and help them obtain higher levels of sexual gratification and satisfaction. Information regarding urinary function and management, the effects of various dietary factors and behavioral variables, and the effects of incontinence on sexuality should be addressed and used as guides for the women and for future studies so that best-practice therapies can be developed and implemented in an attempt to improve quality of life for women with SCI. FUNDING The Ontario Neurotrauma Foundation funded this study. REFERENCES Anderson, K. D. (2004). Targeting recovery: Priorities of the spinal cord-injured population. Journal of Neurotrauma, 21, 1371–1383. Anderson, K. D., Borisoff, J. F., Johnson, R. D., Stiens, S. A., & Elliott, S. L. (2007). Spinal cord injury influences psychogenic as well as physical components of female sexual ability. Spinal Cord, 45, 349–359. Bagi, P., & Biering-Sørensen, F. (2004) Botulinum toxin A for treatment of neurogenic detrusor overactivity and incontinence in patients with spinal cord lesions. Scandinavian Journal of Urology and Nephrology, 38, 495–498. Benevento, B. T., & Sipski, M. L. (2002). Neurogenic bladder, neurogenic bowel, and sexual dysfunction in people with spinal cord injury. Physical Therapy, 82, 601–612. B´erard, E. (1989). The sexuality of spinal cord injured women: Physiology and pathophysiology. A review. Paraplegia, 27, 99–112. Bregman, S., & Hadley, R. G. (1976). Sexual adjustment and feminine attractiveness among spinal cord injured women Archives of Physical Medicine & Rehabilitation, 57, 448–450. Charlifue, S. W., Gerhart, K. A., Menter, R. R., Whiteneck, G. G., & Manley, M. (1992). Sexual issues of women with spinal cord injuries. Paraplegia, 30, 192–199. Cranidis, A., & Nestoridis, G. (2000). Bladder augmentation. International Urogynecology Journal, 11, 33–40. Delehanty, L., & Stravino, V. (1970). Achieving bladder control. American Journal of Nursing, 70, 312–316.

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Sexuality for women with spinal cord injury.

The authors conducted a review of the literature on women's sexuality after spinal cord injury, including studies from 1990 to 2011 retrieved from Pub...
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