MS changes can affect sexual response by making sexual activity difficult physically and emotionally.
Symptoms common to MS, such as fatigue or changes in muscle tone, lack of coordination or pain, can frustrate sexual expression and extinguish desire. Bowel and bladder dysfunction can inhibit and cause embarrassment. Cognitive changes challenge the most devoted couple, yet in the presence of any of these symptoms, it is possible to find creative ways to keep the physical expressions of love alive.
A person who does not feel well or thinks of himself or herself as unattractive because of a less-thanperfect body may shun sex or find their love life deteriorating. People who are not in a relationship may be reluctant to date and develop new love interests. Secondary sexual dysfunction often indirectly affects sexual response and ability to perform in both men and women with MS. Sexual complaints are common in the general population and are capable of having a profound impact on quality of life and relationships. Adding chronic illness to the picture makes problems more likely, yet such concerns and complaints are not always shared with partners or healthcare professionals. Nevertheless, strategies exist which can be employed to cope with and manage symptoms, promote intimacy, strengthen relationships and encourage sexual pleasure and expression.
Fatigue
Fatigue is perhaps the most common symptom reported by people with MS, and it can be the most disabling. For a complete discussion on the differenttypes and causes of fatigue, see Issue 1 of MS in focus (January 2003). Regardless of the type or cause of fatigue, it can have a negative affect on interest in sex and lead to a reluctance to initiate lovemaking, or even an avoidance of intimacy. The well partner may misunderstand this “disinterest” and loss of pleasure and resent the person with MS. This may come at a time when they are assuming additional responsibilities, coping with changing roles or it may be perceived as a personal rejection. Often, partners fear hurting the person with MS. Effective communication requires that feelings be shared and dealt with openly and honestly, thus making it possible to explore options for maintaining a satisfactory sexual relationship despite physical changes.
Energy conservation measures can be employed to manage fatigue. These techniques can be applied to sexual issues as well. Time for intimacy may need to be prioritised, perhaps for the time of day when the person with MS has the most energy. One couple set up a weekly “date” when both could take a long lunch. Planning and anticipating their time together during the day when the children were at school became a pleasure in itself. Lifestyle changes may need to be made when there are not enough hours in the day to accomplish all that needs to be done. Simplifying tasks and accepting available help can lessen anxiety. Planning for rest time together can lessen fatigue and simultaneously meet the need for additional time together.
Medications are available which can be used to counteract fatigue, but others actually contribute to it. If medication side-effects are suspected to be worsening the fatigue, a schedule adjustment could provide respite. A dose can be timed to allow for more energy when intimacy is planned. Disease-modifying therapy schedules, like other medications, should be reviewed with a healthcare provider who can advise and educate about adjustments that minimise untoward effects. At times, a dose can be skipped or postponed to avoid the side-effect that is getting in the way of sexual performance or interest.
Both the person with MS and the
partner deserve to have their
sensitivities and willingness to accept
or reject various forms of sexual
pleasuring respected.
Weakness
Muscle weakness may necessitate alterations in sexual practices. Comfort measures, such as properly placed pillows, provide additional support and can be playfully used to “set the scene” for romance. Discussing new positions and various expressions of sexuality, such as massage or oral sex, can add excitement to the relationship and boost, rather than diminish, self-image. Partners may or may not be comfortable with such variations or may be unwilling to engage in “sex play”. Both the person with MS and the partner deserve to have their sensitivities and willingness to accept or reject various forms of sexual pleasuring respected. Rejecting an alternative that compensates for limitations imposed by MS symptoms need not be a rejection of the person, and other ideas can be pursued.
De-conditioning (weakness from inactivity) can be helped by a fitness programme modified to work with the person’s physical limitations. Kegel exercises are a type of exercise that can improve decreased vaginal tone by strengthening the pelvic floor muscles. See Issue 2 of MS in focus (July 2003) for information on how pelvic floor exercises are performed.
Lack of coordination and tremor
Lack of coordination may make sex and sexual expression feel clumsy, as can tremor. But besides being awkward, these symptoms may also interfere with the couple’s style of having sex. It must beremembered that persons with MS still have needs for contraception and protection from sexually transmitted disease, but previously-used methods may no longer be practical. A partner may need to help with the condom or insert the diaphragm and it may be difficult to change from being a care partner to being a lover. Again, good communication between partners and advice from professionals can minimise embarrassment and maximise closeness and pleasure.
Bowel and bladder problems
Another source of anxiety and distress can be bowel and bladder disturbances. These problems go hand in hand with sexual dysfunction, since nerve pathways are shared or close to each other. Incontinence, or even fear of having an accident, can cause a person to avoid sex entirely, thus depriving them of the closeness it brings. There are many ways to deal with involuntary elimination, but discussing the possibility of losing urine or stool during sex, and having a plan should it occur defuses the situation and can allow the couple to manage their concerns without spoiling the moment. Bowel and bladder rehabilitation plans can include toileting regimens designed for the unique needs of individuals and couples. For example, steps such as limiting fluid intake for a few hours before sexual activity can be effective. For men, leakage of small amounts of urine can be managed by wearing a condom. For both sexes, simply padding the bed well can help everyone relax. Another strategy is performing intermittent self-catheterisation prior to intimacy. This technique serves to empty the bladder completely, giving the person more confidence that he or she will not be embarrassed by an accident during sexual expression.
Urinary tract infections are common in MS and are sometimes aggravated by sexual activity. Proper evaluation and treatment of bladder problems can go far to maintaining quality of life and independence. In-dwelling catheters make the logistics of intercourse difficult but not impossible. With advice from a healthcare provider, often the bag can be emptied and then clamped for a period of time. Taping a long drainage tube to a woman's abdomen can avoid pulling and will place the catheter well out of the way. Similarly, a catheter in the penis can be folded back on itself, clamped and taped and a condom placed over it all.
Pain
Pain can impact significantly on interest in sex as well as performance ability. Medications used to relieve pain may add to sleepiness or fatigue. Understanding the type of pain can influence the best way to manage it. Muscle tightness, intense itching and spasticity may all be called “pain”. Medications that bring relief must be well chosen for the type of pain they treat and used in just the right dose and frequency to give relief with the least disadvantageous side-effects. An extra or welltimed dose before intimacy can often provide effective symptom management and reassure the partner that he/she is not adding to discomfort. It is also important that a symptom such as adductor spasms (which cause involuntary pulling together of the legs) is not seen as an indication of the person's interest or willingness to have sex. Again, communication is the key to avoiding misunderstanding and hurt feelings. Water soluble lubricants can make intercourse more comfortable, without predisposing to urinary tract infection.
Sensory issues
Changes in sensation can also interfere with sexual pleasure (see page 5 on body mapping). Non-genital symptoms such as numbness and tingling can distract and discourage either partner. Impaired genital sensations can diminish pleasure, while heightened sensitivity may make even the lightest touch unbearable. What feels good at one time may be excruciatingly painful on another occasion. Frank discussion of needs and limitations can avoid problems, and simple solutions as well as medications can be used to enhance pleasure. Something as easy as a bag of frozen peas gently rubbed on a woman's perineum (genital area) can increase sensitivity and pleasure and can be used as foreplay. Special oils are available which encourage touch and also increase pleasure when sensation is impaired. Vibrators can be used alone or with a partner.
Mobility
MS symptoms can indirectly affect the sexual response. Devices used to compensate for loss of function can also damage confidence and selfimage. They may be seen as less than sexy. Canes, wheelchairs, braces and walkers are often identified with being “sick” or “old”. Spontaneity can be a problem if great effort has to be made to get around. Asking for help is often difficult. It can be challenging to think of oneself as sexually desirable when confronting a body that is less than perfect, and requires extra care to maintain. Adjusting expectations from performance-oriented sex, where intercourse is seen as the only desirable outcome, can be liberating and allows for pleasuring and sexual satisfaction despite the limitations of impaired mobility.
Cognition
Cognitive changes can be amongst the most potentially damaging to the relationship, since they can undermine the person's sense of who he/she is. A partner may feel this is no longer the person they once knew. Changes in attention and concentration may be perceived as lack of interest or love, and may irreparably strain the relationship. Changes in mood, memory loss and depression can be frightening, frustrating and sometimes infuriating. All interfere with intimacy. Individual or couples counselling may be advised. Successful management of cognitive symptoms includes creating a stimuli-saturated, minimally distracting environment. Partners can share what will and will not be seen as exciting and what promotes passion and interest. Many symptoms of MS are invisible while others are painfully obvious. All can impact on quality of life and sense of well-being. While life changes affect everyone, changes from MS can directly and indirectly affect sexuality. Successful management requires creativity, communication, patience and resource management so that a person is able to maintain his or her sexual identity.
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