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Sexuality and Multiple Sclerosis
SEXUALITY, MULTIPLE SCLEROSIS AND WOMEN
Frederick W. Foley, PhD & Audrey Sanders, MA, Ferkauf Graduate School of Psychology and Albert Einstein College of Medicine Yeshiva University, New York, USA

SUMMARY

Studies on sexual dysfunction in women with multiple sclerosis (MS) are problematic in quality and few in number. Nevertheless, concerns with sexual function range from approximately 40-80% surveyed, with decreased sexual desire, diminished orgasm, fatigue that interferes with sex, and difficulties with vaginal lubrication being among the most frequently cited symptoms. Sexual dysfunction stems from primary (direct physical), secondary (indirect physical), or tertiary (psychosocial) causes. Controlled treatment outcome studies for sexual dysfunction among women with MS have largely not yet been conducted. Clinical guidelines for treatment are offered, and follow a careful assessment of primary, secondary and tertiary symptoms by health care providers who are familiar with MS.
Sexuality has been described as, "an ever-present, ever-evolving, multifaceted possession of every human being" (Levine,1992). The way in which each person individually experiences sexuality stems from a variety of sources. Factors such as one's culture, religion, emotions, attitudes, self-esteem, sexual identity, and physical being all contribute to how each individual experiences sexuality. Just as these factors are constantly evolving with different experiences and stages of life, our experience of our own sexuality is in a continuous process of change and development. The presence of physical illness, such as multiple sclerosis, has the potential to complicate the course of sexual development and the way in which one defines and expresses one's own sexuality.
Studies on the frequency and nature of sexual difficulties in women are few in number and problematic in quality. Most studies have sampled too few persons to have results that have meaning for women with MS as a whole, failed to use control groups, evaluated samples that were non-representative of the MS population in the community, and utilized poorly constructed surveys. In addition, studies on the treatment of sexual dysfunction have an almost exclusive male focus in the literature, and deal primarily with the pathophysiology and/or the pharmacological and non-pharmacological management of erectile dysfunction.

The few epidemiological studies on sexual dysfunction for females with MS report a wide range of sexual concerns that seem to occur with varying frequencies. Hutler and Lundberg (1995) interviewed 47 women with advanced MS. They found decreased sexual desire was the most common sexual complaint (59.6% surveyed). Problems with vaginal lubrication and loss of orgasm were also noted, and sexual problems were correlated with severity of disability, bladder and bowel disturbance, and weakness of the pelvic floor muscles. A survey of minimally disabled people under age 50 found that 74 percent of females experienced sexual problems as compared to 19 percent in a control group of persons without MS (Minderbound et al 1948). Valleroy and Kraft (1984) determined that 56 percent of the females in their study experienced sexual dysfunction. The most frequently occurring sexual symptoms reported by women in this study, in decreasing order of frequency, were fatigue, decreased sensation, decreased libido, decreased frequency or loss of orgasm, and difficulty with arousal. Similar symptoms were described by 56 percent of the participants in Stenager et al's (1990) study who reported negative changes in sexual functioning after the onset of MS. Women who said they were less sexually active following MS reported changed sensation in the genital region, reduced vaginal lubrication, and reduced sexual desire. Sexual problems of a secondary nature were reportedly due to paresis, spasticity, and incontinence. This study also found a significant relationship between sexual dysfunction and level of disability.

One recent well-done survey demonstrated a number of improvements in methodology, including the random selection of a large population of persons with MS from both urban and rural areas, very high rates of participation in the study, and the use of a comprehensive survey instrument that assessed a wide variety of demographic and psychosocial factors in addition to sexual concerns (McCabe et al, 1996). Seventy four women participated, with lack of sexual interest (29%), inorgasmia (23.7%), poor lubrication (19.4%), reduced satisfaction with masturbation (9.7%), reduced frequency of masturbation (7.5%), painful intercourse (6.5%), and vaginismus (1.1%) cited as sexual concerns. 79.6% reported at least one sexual problem, although 53.5% reported either no or slight concerns about their sexual difficulties.

Although better epidemiology studies need to be done, it is clear that sexual problems occur with high frequency among women who have MS. At this time, there are fewer reports of studies evaluating treatment outcomes for dealing with sexual changes. Coping with sexual changes in MS can be particularly complex, since changes or problems can stem from primary (direct physical), secondary (indirect physical), or tertiary (psychosocial) sources.
PRIMARY SEXUAL DYSFUNCTION IN MS

Primary sexual dysfunction occurs as a result of MS related physiological changes in the central nervous system that directly impair sexual feelings and/or response.
Women may experience decreased libido (sexual desire), altered genital sensation, decreased vaginal lubrication, and decreased frequency and/or intensity of orgasm. Some women experience a loss of desire, but maintain the ability to experience sexual pleasure, once engaged in a sexual experience.
Coping with primary sexual dysfunction can be facilitated by discussing symptoms with a health professional knowledgeable about MS. Treatment typically begins with a detailed medical evaluation, which includes a careful investigation of medications for their possible effects on sexual functioning. The evaluation of primary sexual dysfunction should also include a sexual history which thoroughly examines the current problem and investigates both present and prior sexual relationships and behaviors. The person with MS and their sex partner may be asked to be interviewed together. This enables the health care professional to gain a better understanding of the problem as it is experienced by both individuals. The interviewer may ask a number of questions regarding communication, intimacy, and sensual or erotic behaviors which take place within the couple in order to obtain a balanced view of the couples' relational strengths and weaknesses. When this has been accomplished, treatment may begin with feedback from the assessment process, education about the effects of physical symptoms of MS, and suggestions for managing these symptoms.

Primary physical symptoms in women can often be treated with a variety of easily available products. Decreased vaginal lubrication can be dealt with by using water-soluble lubricants, such a K-Y Jelly. Uncomfortable genital sensory disturbances, including burning, pain, or tingling can sometimes be relieved with prescription medications, such as carbamazepine or phenytoin. Decrease vaginal/clitoral sensation can be sometimes alleviated by more vigorous stimulation which can be accomplished manually, orally, or by using vibrators. Strap-on clitoral vibrators may be worn by the woman during intercourse, or attached to the base of the penis during intercourse, allowing for more intense clitoral stimulation. A large selection of vibrators and other sexual aids have become more readily available in recent years due to the proliferation of mail-order services which allow people to shop conveniently and privately at home. Some mail-order companies are sensitive to the needs of physically disabled persons and can be good sources of information for selecting sexual aids. Exploring alternative sexual touches, positions, and behaviors, while searching for those which are the most pleasurable, is often very helpful. Masturbation with a partner observing or participating can provide a great deal of feedback that can enhance sexual interactions.

One of the most difficult primary sexual symptoms to compensate for is loss of sexual desire. When loss of desire is due to secondary sexual dysfunction (e.g., as a result of depression), treatment of the interfering secondary or tertiary symptoms will frequently restore libido. Some women with sustained loss of libido report anecdotally that they experience sexual enjoyment and orgasm, even with the continued absence of sexual desire. These women can sometimes compensate for the loss of libido by initiating sexual activities in the absence of desire, since they can frequently experience sexual pleasure with sufficient emotional and physical stimulation. This adaptation requires developing new internal and external 'signals' that become associated with wanting to participate in sexual activity. For example, instead of experiencing libido or physical desire as an internal 'signal' to initiate sexual behaviors, one can experience the anticipation of closeness or pleasure as an internal cue that may lead to initiating sexual behaviors and the subsequent enjoyment of sexual activity.

It is important to note that the efficacy of any treatment depends upon the ability of the patient and her partner to openly communicate about sexual issues and to decide on methods which are comfortable and enjoyable for both.
SECONDARY SEXUAL DYSFUNCTION IN MS

Secondary sexual dysfunction refers to MS related physical changes which indirectly affect the sexual response.
In multiple sclerosis, the incidence of fatigue, muscle tightness or spasms, bladder and bowel dysfunction, and pain, burning or discomfort can have adverse effects on the experience of sexual activity. The interference of these symptoms on sexual function can be alleviated frequently by taking an aggressive approach to symptom management. A significant part of managing secondary sexual dysfunction is to become well educated about the nature, causes, and treatments of MS symptoms which affect sexual functioning. Researchers have found that one of the most commonly occurring secondary sexual symptom among women with MS is fatigue (Vallcroy,Kraft 1984). Fatigue greatly interferes with sexual desire and the physical ability to initiate and sustain sexual activity. Fatigue can be managed in a number of ways. It is often helpful to set aside some time in the morning for sexual activity since this is when MS fatigue is at its lowest ebb. Utilizing energy conservation techniques, such as taking naps and using motorized scooters or other ambulation aids, can be used to save energy for sexual activities. Choosing sexual activities and positions which are less physically exerting for the partner with MS may minimize fatigue during sex. In addition, a physician can prescribe a mild central nervous system stimulant, such as amantadine or pemoline, to help minimize fatigue.

Pharmacological interventions have also been used to manage bladder and bowel symptoms in MS. Some common symptoms of bladder dysfunction include incontinence, urgency, and frequent urination. Anticholinergic medications help manage incontinence by reducing spasms of the bladder and urethra. One side effect of bladder medications is that they cause dryness of the vagina. However, as previously mentioned, vaginal dryness can be alleviated by using generous amounts of water-soluble lubricants, such as K-Y Jelly. A physician may be able to help modify daily medication schedules to allow for maximum effectiveness at the time of planned sexual activity.
In managing bladder and bowel symptoms, it is also helpful to plan for sexual activity by avoiding drinking liquids a few hours prior to sexual activity and by emptying the bladder and bowel just before anticipated sexual activity. Health care providers may be able to offer tips for handling or removing catheters temporarily. If it is recommended the catheter remain in place, woman may move it out of the way by folding it over and taping it to the stomach with paper tape (Neistadt,Freda 1987). It is a good idea to experiment with different sexual positions and activities to find those which feel the most comfortable with the catheter in place. The book Choices: A Guide to Sex Counseling with Physically Disabled Adults (Neistadt,Freda 1987) offers illustrations of positions for sexual intercourse which are most beneficial for managing catheters and a wide range of physical limitations. It is sometimes helpful to put a plastic mattress pad on the bed and to keep towels handy to wipe up any leaks or accidents.
The fear of losing bladder or bowel control during sexual activity or feeling that one is unattractive because of MS related equipment or physical symptoms, can have an impact on sexuality by inhibiting sexual desire and increasing feelings of vulnerability and anxiety. Having frank and open discussions with a sexual partner about bladder or bowel dysfunction, prior to engaging in sexual activity, may remove some of the fear about losing control, and allow for a more enjoyable sexual experience.
Other secondary sexual symptoms such as muscle spasms, tremors, pain, tingling or burning sensations, and positional discomfort interfere with intimacy and sexuality by making it difficult to enjoy sexual activities or find comfortable sexual positions. Administering antispasticity medications, such as baclofen, one hour before sexual activity is often helpful in alleviating spasms. Other treatments, such as chemical nerve blocks or surgery, are sometimes used to treat severe spasticity if medication is not effective.
It is helpful to conduct a 'body mapping' exercise for the treatment of primary (genital) and secondary (non-genital) sensory changes. Body mapping involves the systematic exploration of the locations of pleasant, erotic, decreased, or uncomfortable sensations. This will allow both the woman with MS and her partner to understand her erogenous zones. For example, sometimes stimulating the edges of body zones that are experiencing numbness can feel sensually or erotically pleasing.

Changes in attention and concentration are MS symptoms that can sometimes interfere with maintaining sexual desire or feelings during sexual activities. Partners sometimes misinterpret this symptom to mean that they are deficient as lovers. The main strategy to deal with this symptom is to minimize non-sexual or romantic stimuli and maximize sensual and sexual stimuli. Creating a romantic mood/setting, using sensual music and lighting, talking in sexy ways, and engaging in erotic touching provide multisensory stimuli that minimize 'cognitive drift' during sex. Introducing humor at those moments when the person 'loses attention', with mutual acceptance of this frustrating symptom helps minimize its impact (Foley,Werner,1996).

In summary, there are several approaches to managing secondary sexual problems in MS. First, it is important to become familiar with the MS symptoms and treatments which affect sexual functioning. Information can be obtained directly from physicians, nurses, or other health professionals involved in the care of persons with MS or from MS literature. In addition, a wealth of knowledge can be found from speaking with others casually, via MS chat rooms, and bulletin boards on the Internet, via established MS information outlets on the internet (e.g. The World of Multiple Sclerosis web site) or through local support groups and other activities run by and for individuals with MS. Information about support groups, the Internet and MS, and MS related information may be found by contacting the Multiple Sclerosis Society in your country or the office of the International Federation of Multiple Sclerosis Societies in London, England.

Second, it may be helpful to utilize various pharmacological approaches in managing secondary sexual dysfunction. A physician competent in the care of individuals with MS may be able to prescribe medications to alleviate the symptoms which hinder sexual enjoyment. In addition, a physician can help modify treatment regimens to best accommodate sexual needs.

Lastly, planning for intimacy and modifying sexual activities can be quite beneficial. While planning for sexual activity may initially take away some of the romance and spontaneity, it will eventually lead to a more positive, satisfying sexual experience. For example, in managing the common MS symptom of fatigue, planning to have sex in the morning when fatigue is usually at a minimum, may allow for more intense, energetic sexual activity. In addition, emptying the bowel and bladder before sexual activity and putting a plastic mattress guard on the bed will alleviate some of the worry over having an accident and will allow for more attention to be placed on the activity at hand.

Planning for intimate activity and altering familiar sexual behaviors can sometimes be emotionally frightening or uncomfortable. It is easier to adapt to these modifications by having open communication and flexibility within the relationship. Counseling can be helpful in maintaining intimacy by assisting couples to discuss these issues with one another and encouraging the exploration of new approaches to intimate and sexual communication.
TERTIARY SEXUAL DYSFUNCTION IN MS

Tertiary sexual dysfunction refers to the psychological, social, and cultural issues that interfere with sexual functioning.

The physical changes occurring for women with MS can alter the way they view themselves as sexual beings and the way they believe their sexuality is being perceived by others. The psychological and cultural context in which physical changes occur can adversely affect self-image, mood, sexual and intimate desire, and the ease or difficulty with which a woman communicates with her partner(s). Open communication and exploration are required frequently to cope well with sexual changes in MS. Increasing the comfort of the woman with MS, her partner, and health care team in discussing intimacy and sexuality greatly facilitates this process.

The physical limitations imposed upon people with MS sometimes require alterations to be made in the tasks and roles undertaken by members of a couple or family. The person with MS may no longer feel like they are an equal member of a relationship since they might not be able to carry out the activities once designated to them. In addition, the partner of an individual may feel overburdened since they now need to assume responsibilities for these tasks. This situation can have a negative impact on the relationship due to covert feelings of guilt and shame by the person with MS and growing resentment in both partners.

Persons with greater disabilities may rely on others to assist them with an array of tasks ranging from the most mundane, such as grocery shopping, to the most personal, such as toileting and washing. This can cause feelings of dependency, anger, vulnerability, and demoralization. The experience of depending on others to carry out basic caretaking needs can lessen the view of oneself as a mature, competent adult with sexual needs and desires. Additional problems may occur in the relationship when the partner of an individual with MS assumes the role of caretaker. The person with MS might have difficulty feeling like a patient one moment and a sexual partner the next. Likewise, their partner may have trouble switching from their role of caretaker to role of lover. If it is practical or culturally acceptable, having non-family members perform care taking activities helps to minimize this 'role conflict'. When care taking must be performed by the sexual partner, separating care taking activities from times dedicated to romantic and sexual activities can minimize this 'role shift'.

The physical changes due to MS can also negatively affect body image. Symptoms such as fatigue, incoordination, muscle weakness, and spasm may not coincide with one's self perception of a sexually active and vivacious adult. Furthermore, some women might have difficulty feeling physically appealing or "sexy" when having to use ambulatory aids and bladder management devices. They may fear they are no longer sexually desirable to their partner, or their partners may have difficulty reconciling the view of someone who is "sick" as being a source of sexual gratification. Either partner may feel confused and rejected, withdraw from the relationship, and feel increasingly isolated and angry. Increased emotional distance between partners makes it more difficult to work through problems and to be comfortable or playful with each other.
The religious, cultural, and societal influences in our lives help to share our thoughts, views, and expectations about sexuality. One of the notions about sexuality that prevails in Western culture is a 'goal-oriented' approach to sex. In this approach, the sexual activity is done with the goal of having penile-vaginal intercourse, ultimately leading to orgasm. Here, the sexual behaviors labeled as foreplay, such as erotic conversations, touching, kissing, and genital stimulation, are seen as steps that inevitably lead to intercourse rather than as physically and emotionally satisfying sexual activities in their own right. Hence, couples are not thought to be having 'real' sex until they are engaging in coitus. And, sex is typically not considered 'successfully completed' until orgasm occurs.

This Western view of sexuality leads to spending a great deal of time and energy worrying about the MS related barriers to intercourse and orgasm ('the goal') caused by MS rather than seizing the opportunity to explore physically and emotionally satisfying alternatives to intercourse. The capability to discover new and fulfilling ways to compensate for sexual limitations requires that couples be able to let go of preconceived notions of what sex should be and, most importantly, to be able to openly communicate their sexual needs and pleasures without fear of ridicule or embarrassment.

The overall quality of any intimate relationship is contingent upon the ability to effectively communicate. The demanding and unpredictable course of MS causes some degree of stress and anxiety at times, which sets the stage for partners to 'take out' MS-related frustrations on each other, or emotionally withdraw from the relationship. The times when partners need the most support and encouragement from each other are precisely the times when it may be most difficult to offer.

Foley and Iverson (1992) describe several fundamental components of successful communication. The first aspect of communication is active listening which encompasses such behaviors as giving undivided attention, observing each other's body language, fully hearing each other's messages before responding, and requesting clarification if necessary. When these skills are developed, partners are more capable of offering one of the most crucial interpersonal skills needed to enhance and maintain a harmonious and pleasurable relationship--empathy (Foley,Iverson 1992). Empathic communication requires that an individual be able to comprehend their partner's thoughts and feelings in a given situation, and be able to convey their understanding to their partner. There is a greater chance of enhancing emotional intimacy, even at difficult moments, if both partners feel they have been understood and respected by the other.

A paradox present in intimate relationships is that the safer one feels, the more one's deepest fears and insecurities tend to emerge (Gray,1992). Intimate communication requires ongoing attention and dedication, but offers the opportunity to resolve these fears. Couples frequently are willing to devote significant time and effort to understand each other in the early phase or 'courtship' period of their relationship. Devoting time and effort to protect and nurture one's relationship, even in the face of coping with the demands of MS and other life tasks, is essential to maintain intimacy. Obtaining information about MS and sexuality, developing a comfortable sexual vocabulary, and obtaining peer support or professional counseling can facilitate this process.

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REFERENCES
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