Sexuality Dorothea Cassidy Pfohl RN, BS, MSCN

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1 MSNursing Introduction to Multiple Sclerosis Nursing Care Dorothea Cassidy Pfohl RN, BS, MSCN OBJECTIVES After reading this article, nurses who are new to the care of people with MS will be able to do the following: Distinguish between primary, secondary and tertiary symptoms of sexual dysfunction in MS Describe treatments for and the methods of coping with symptoms of sexual dysfunction in MS Discuss sexuality and intimacy with people with MS and their partners. INTRODUCTION Changes in sexual function and/or responsiveness are common in MS, and symptoms can be experienced early in the course of the disease. Discussion of sexual function should be included in a review of MS symptoms and revisited regularly. By speaking openly, the nurse communicates permission to discuss the topic and treatment recommendations. Although some patients are not comfortable discussing personal matters, the invitation to talk about sexual issues and willingness to listen and respond to questions and concerns is usually appreciated. Direct discussion or the use of printed materials about intimacy and sexual dysfunction in MS helps promote the patients sense of self- esteem, reduces their discomfort, and lets them know that they are not alone in the experience. Also, it can be reassuring to the patient and partner to know that changes in sexual function may be related to neurologic impairment or medication and are not necessarily a reflection of problems in the relationship or an indication of lack of love. And, although changes in sexual function are commonplace in MS, MS does not usually effect fertility. Hence, men and women with MS need the same support and information about family planning, contraception and sexually transmitted disease as any other couple. Sexual problems in MS can be divided into primary, secondary and tertiary types. PRIMARY SEXUAL DISYFUNCTION Primary sexual dysfunction occurs as a result of MS-related changes in the central nervous system that directly impair sexual feelings and/or response (Foley & Werner, 2000). This may be manifested as decreased or absent libido, altered genital sensations (which includes numbness, painful intercourse, Tel: MS-TREAT ( ) HealthProf_info@nmss.org This series is funded by an unrestricted educational grant from

2 page 2 and even aversion to being touched because of heightened sensitivity), decreased frequency or intensity of orgasms, erectile dysfunction, decreased vaginal lubrication, decreased clitoral engorgement, and decreased vaginal muscle tone. Many of these complaints are also common with normal aging and may be ignored or endured silently. The nurse can forge a rapport that allows the patient to present such complaints, and can inform the patient about treatment options. Decreased or absent libido is a common complaint of sexual dysfunction among women in general, but is even higher in women with MS. Loss of libido need not signal an end of sexual expression. Desire is associated with initiating and/or being receptive to sexual behavior. When lesions in the central nervous system impair libido, there are numerous sensory, perceptual, and emotional pathways that may remain for the most part intact. And, experiencing pleasure is possible in the absence of libido. Pleasure can be relearned with behavioral reconditioning. There are many techniques and devices to enhance sexual pleasure. Pelvic exercises, including well-known Kegel exercises (Foley & Werner, 2000), are used to improve tone. Eros Therapy is a device designed for women that places gentle suction and vibration on the clitoris. Sexual aids like vibrators may help with loss of deep pressure sense and impaired sensation, numbness and tingling. Something as simple as a bag of frozen peas gently rubbed on a woman s perineum is said to increase sensation and pleasure. There are several websites (e.g., and for sex products that discretely package their products for shipment. Some medical equipment companies also supply these aids. Simple interventions can help make sex more comfortable for the person with MS. Generous use of a water-based lubricant is advised: K-Y jelly is available in a tube; Replens or Astroglide are vaginal packets of lubricant that are placed in the vagina and open upon impact. Pillows and side-lying positioning with the knees bent can make sex more comfortable and lessen effort. Making time for intimacy when energy levels are highest is also helpful. Medications used to relieve MS symptoms may interfere with sexual function (Crenshaw & Goldberg, 1996). These include anticholinergic/antimuscarinic medications which reduce vaginal lubrication. Antidepressants such as tricyclics and selective serotonin reuptake inhibitors such as Prozac (fluoxetine hydrochloride) and Paxil (paroxetine hydrochloride) can inhibit libido and orgasm. Antiseizure medications used for control of tremor and pain, and antispasticity medications can produce desire disorder and significant fatigue. Benzodiazepines such as Valium (diazepam) and Xanax (alprazolam), and stimulants such as Dexedrine (dextroamphetamine sulfate), Ritalin (methylphenidate), and Cylert (pemoline) are also associated with orgasmic disorder. Many commonly used medications, from antihypertensives to antihistamines, can be implicated in arousal disorders. A thorough review of medications is prudent, but no treatment should be discontinued without medical advice. Simply postponing a dose or timing it to minimize the effect on lovemaking may be all that is needed. Erectile dysfunction is the primary complaint among men. Evaluation of current medications and use of specialized medical tests like penile Doppler sonography and study of nocturnal penile tumescence can lead to recommendations for treatment. Medical management of erectile

3 page 3 dysfunction includes the use of phosphodiesterase inhibitors (PDE-5 inhibitors). The best known of these is Viagra (sildenafil citrate); newer medications include Levitra (vardenafil HCl) and Cialis (tadalafil). These drugs are taken minutes prior to intercourse. They work well for many men, but foreplay is essential. Crushing the pill can make it work faster. Levitra and Cialis should not be taken more than once a day. Cialis is reported to be effective for 36 hours. Medical conditions, like cardiac history, need be considered before taking these medications. Patients on nitrate medications should not use these drugs because significant decrease in blood pressure may lead to myocardial infarction, stroke, or death. For patient information and prescribing information, consult the official product website. Sublingual apomorphine hydrochloride (Uprima or Ixense ) is available in Europe; it is awaiting FDA approval (Schoen, 2003). Alternative medicines and treatments should be reported and recorded when reviewing medication regimens. Yohimbe bark and panax ginseng have been promoted to increase erectile functions, but can interact adversely with other medications. Testosterone injections are sometimes given in conjunction with herbal medicines. Folk remedies abound but are poorly studied, unlike drugs like Viagra that have been extensively researched. It is also worth noting that smoking, recreational drugs, and alcohol can have negative effects on sexual performance. Other methods for improving male sexual performance include intracavernous injection of alprostadil (Caverject or Prostin VR ) or papaverine. Penile self-injections are quite effective when first-line therapy fails. There is minimal discomfort to achieve erection, but sometimes bruising, pain, or ache in the penis occurs. Prolonged erection (priapism) is of serious concern and requires prompt treatment. A medicated urethral system for erection (MUSE ) contains alprostadil in a soft pellet suppository which is inserted into the penis. Topical medications (Alprox-TD or Topiglan ) are also available. In external vacuum erection therapy, (e.g., ErecAid ), a plastic cylinder activates a pump creating a vacuum. Blood flowing into the penis causes an erection and then a plastic ring slips over the penis (like a rubber band) to maintain the erection. The patient should be apprised of product warnings and educated about the proper administration of all these products. Penile prosthesis is a permanent solution in which a malleable semi-rigid rod with inflatable cylinders is surgically implanted. Insertion of this device requires a hospital stay and period of recovery. Results may be disappointing if the patient has unrealistic expectations. SECONDARY SEXUAL DYSFUNCTION Secondary sexual dysfunction occurs as a result of MS-related physical changes or pharmacological treatments that indirectly affect sexual feelings and/or response (Foley & Werner, 2000). These include bladder or bowel dysfunction, fatigue, non-genital sensory paresthesias which reduce pleasure and comfort, spasticity, decreased non-genital muscle tone, weakness which interferes with sexual activity, cognitive impairment, tremor, or pain. Many symptoms, once identified, can be managed successfully.

4 page 4 Bowel and bladder dysfunction are often concurrent with sexual dysfunction, since the nerve pathways are shared or proximal. Individuals may focus more on the fear of having an accident than on the enjoyment of lovemaking, and this may result in avoidance of intimacy altogether. Commonly asked questions include how to cope with indwelling urinary catheters. Women can tape the drainage tube to the abdomen to prevent pulling or pressure; sexual positions that minimize catheter pulling are advised. Also, the bag should be emptied and the connection to the catheter taped to prevent leakage. Longer drainage tubing allows the bag to be placed out of the way. If the physician determines that the bag can be temporarily disconnected, the catheter can be clamped during sexual activity; men can then fold the indwelling catheter over the penis and place a condom over both the penis and catheter. In general, fluids can be restricted for several hours before anticipated sexual activity and males can use a condom to cope with small amounts of urinary leakage. Discussing such techniques and planning by partners can reduce tension and avoid spoiling the moment. Simply padding the bed can make worries about incontinence lessen. Bowel scheduling, like emptying the bladder before sexual activity, also can ease concerns about accidents. Cognitive changes can be perceived as a loss of love or interest from a partner. Cognitive impairment can have a negative impact on the individual s attention and stimulation. Several techniques can be recommended to address these issues. The couple can strive to create a stimulus-focused, minimally distracting environment. They may develop intimacy re-entry rituals when distraction does occur. And, in a non-blaming way, the couple can address interfering thoughts and interpretations for the person with MS and the partner, and can share what will and won t be experienced as a turn on. By learning how to alter the pace of sexual touching and communication, when distraction does occur, it can be accepted more easily. Pain, spasticity and tremor can also impact pleasure and performance (Schapiro, 2003). A partner may be afraid of hurting the loved one, and this may further misunderstanding or resentment. Fatigue can also lead to avoidance of sex, depriving individuals of the intimacy and pleasure it provides. Straightforward advice about energy conservation, positioning, and comfort measures can allow a couple to address their issues and work toward their own style of problem solving. TERTIARY SEXUAL DYSFUNCTION Tertiary sexual dysfunction refers to the psychological, social, and cultural issues that interfere with sexual feelings and /or response (Foley & Wener, 2000). Manifestations include changes in self-image or body image, demoralization and grief, clinical depression, performance anxiety, family and social role changes, and role conflict. -inhibiting expectations and judgments may be the result of internalized cultural values, misunderstanding, or miscommunication. Screening for these factors includes assessment of the patient s psychological status, looking for anxiety, stress, depression, and discouragement. Treating emotional distress can lead to significant improvement in sexual satisfaction.

5 page 5 People often equate sex with intercourse and judge anything less to be inadequate. Men may link their masculinity with sexual performance and may feel less a man, or no longer a good husband. They may feel diminished by loss of income or ability to carry their weight. Women tend to judge themselves harshly and compare their bodies unfavorably with icons of popular culture. Caregiving needs may conflict with feeling sexy or may even lead to resentments and difficulty in switching roles from carepartner to lover. Partners may feel guilty about having needs of their own, and patients may find it difficult to introduce questions about sexuality with their partners. The nurse is advised to offer some private time and invite discussion of personal issues. Unfortunately, issues such as spousal abuse, neglect, infidelity, intimidation, and fear of abandonment must also be considered. SUMMARY is a complex, vital part of life. It is difficult to define or measure, and its expression is private and individual. Our society talks a lot about sex and sexuality, but many myths and negative attitudes persist, especially about sex and a chronic illness like MS (Schapiro, 2003). Patients may worry that a diagnosis of MS means an end to an active sex life. This is not the case. Reactions to sex may change and adaptations may need to be made, but sexual needs and desires are neither inappropriate nor do they disappear. Even the most physically challenged person can express love and experience physical pleasure. REFERENCES Crenshaw TL, Goldberg JP. Sexual pharmacology: Drugs that affect sexual functioning. New York: WW Norton, Foley FW, Werner M.. In: Kalb RC, ed. Multiple Sclerosis: The questions you have, the answers you need. 2nd ed. New York: Demos, 2000: Schoen M. Erectile dysfunction: Straight answers about treatment options. Nurs Spectr, 2003; 2(24PA): Schapiro RT.. In: Managing the symptoms of multiple sclerosis. 4th ed. New York: Demos, 2003: REVIEW EXERCIES 1. An example of primary sexual dysfunction is a. Erectile dysfunction b. Numbness in the genital region c. Difficulty in achieving orgasm d. All of the above

6 page 6 2. An example of secondary sexual dysfunction is a. Spasticity b. Social isolation for fear of incontinence c. Erectile dysfunction d. Loss of libido 3. Patients should not take sildenafil, vardenafil, or tadalafil if they are also on a. Copaxone b. Nitrate medications c. Diuretics d. Insulin 4. The most serious adverse reaction from penile injection therapy is a. Erectile dysfunction b. Lipoatrophy c. Priapism d. Ecchymosis 5. An example of tertiary sexual dysfunction is a. Urinary incontinence b. Depression c. Erectile dysfunction d. Decreased genital sensation Answers: 1d; 2a; 3b; 4c; 5b April National Multiple Sclerosis Society

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