Life with MS

“Although more than 56 million people with disabilities are currently living in the United States and Congress passed sweeping disability rights legislation in 1990, the right to sexual expression and satisfaction for disabled people remains the last taboo, the last frontier on the long road to equality.”   
Everyone is a sexual being. From the moment of birth until the moment of death, our capacity for communication, relatedness, and intimacy unfolds in a natural developmental sequence. As such, it is natural for everyone to desire affection and intimacy. Whether you are newly diagnosed, young, mature, single or in a committed relationship, chronic illnesses and disability do not diminish these needs and desires.
 
With MS, symptoms can occur that may present obstacles in your capacity for emotional relatedness and sexual intimacy. By approaching these obstacles as challenges rather than burdens, you can empower yourself to explore the variety of possible solutions in relating intimately. Educate yourself. Overcome your embarrassment and ask questions of yourself, your health care team, and your partner. Experiment, and even challenge yourself to change some of your ideas about what intimacy and sexuality really means to you. Thinking about yourself as a sexual being, acknowledging that part of yourself, is the first step.
 
Prevalence of sexual changes in MS
 
Although normal sexual function changes throughout the life span, MS can affect an individual’s sexual experience in a variety of ways. Studies on the prevalence of perceived sexual concerns or problems in MS range from approximately 40 to 80 percent in women and 50 to 90 percent in men. Reports of sexual problems in the general U.S. population range from 30 to 50 percent, depending on the study, reflecting the widespread prevalence of sexual complaints in general.
 
How does MS affect sexuality?
 
The ways in which MS can affect sexuality and expressions of intimacy can be divided into primary, secondary, and tertiary sexual dysfunction.
 
Primary sexual dysfunction stems directly from MS-related changes in the brain and spinal cord that affect the sexual response or the ability to feel sexual pleasure. In both men and women, this can include a decrease or loss of sex drive, decreased or unpleasant genital sensations, and diminished capacity for orgasm. Men may experience difficulty achieving or maintaining an erection and a decrease in or loss of ejaculatory force or frequency. Women may experience decreased vaginal lubrication, loss of vaginal muscle tone and/or diminished clitoral engorgement.
 
Secondary sexual dysfunction stems from MS-related symptoms that do not directly involve nerve pathways to the genital system, but nevertheless impair sexual pleasure or the sexual response. Secondary symptoms may include bladder and bowel problems, fatigue, spasticity, muscle weakness, body or hand tremors, impairments in attention and concentration, and nongenital sensory changes.
 
Tertiary sexual dysfunction results from disability-related psychosocial and cultural issues that can interfere with one’s sexual feelings and experiences. For example, some people find it difficult to reconcile the idea of being disabled with being fully sexually expressive. Changes in self-esteem –  including the way one feels about one’s body – depression, demoralization or mood swings can all interfere with intimacy and sexuality. The sexual partnership can be severely challenged by changes within a relationship, such as one person becoming the other person’s caregiver. Similarly, changes in employment status or role performance within the household are often associated with emotional adjustments that can temporarily interfere with sexual expression. The strain of coping with MS challenges a couple’s efforts to communicate openly about their respective experiences and their changing needs for sexual expression and fulfillment.
 
Assessing sexual problems
 
Diagnosis of sexual dysfunction is usually based upon the self-reports of the person with MS or the sexual partner. Determining the etiology, or cause, of the dysfunction, and whether it stems from primary, secondary, and/or tertiary sources, requires medical assessment by a healthcare professional knowledgeable about MS and sexual function. The diagnostic process may include a physical and neurological exam, sexual history interview, and review of all prescribed medications. Screening for depression and other contributing tertiary factors may be done. Occasionally, additional medical tests may be given. Proper assessment of the contributing factors to the problem sets the stage for effective clinical management. Valid self-reports of sexual function, such as the Multiple Sclerosis Intimacy and Sexuality Questionnaire-19, can be very helpful to both the person with MS and their health care team.
 
Treatment
 
Published treatment studies on MS and sexual dysfunction with rigorous research controls are limited, although better information is available for men than women. Most treatment reports constitute clinical guidelines that describe diagnosis and treatment of the various MS symptoms as they effect sexual function.
 
For Men
 
Treatment for erectile problems
 
For men, complaints of erectile dysfunction are the most common sexual problem in MS, and the most frequent reason men seek sexual help. Oral medicines, such as Viagra® [sildenafil citrate], Levitra® [vardenafil], and the recently approved CialisTM [tadalafil], work by blocking a chemical in the erectile tissues that causes erections to become flaccid. They do not improve sex drive, but are helpful in maintaining erections when they occur. Although these three drugs are similar in action, their dosage, onset of action time and duration of action differ.
 
There are a number of other oral medications in clinical trials for erectile dysfunction, including Vasomax® and IC351®. These medications work by chemically inducing the relaxation of the smooth muscle in the penis, which enhances the ability to develop and maintain erections. Further testing is required on these medications, and it is not yet known whether they will be helpful in MS. Other medications, currently in the testing process, work directly in the brain to increase neurotransmitters that facilitate erectile capacity.
 
Other medical approaches for erectile dysfunction in MS involve the injection of medications into the penis, such as alprostadil [Prostin VR®] or papaverine, which increase blood flow and help maintain blood volume within the spongy erectile tissues. The injection usually causes only mild discomfort. Side effects are minimal for most users.
 
Alprostadil can also be used via urethral suppository [MUSE®], in addition to the penile injection. With this approach, a small plastic applicator is used to insert the drug into the urethra. The direct application of alprostadil to the surface of the penis in the form of a cream or gel is undergoing testing. Alprox-TD® and Topiglan® are both applied directly to the penis, and are rapidly absorbed. Preliminary data indicates that these are helpful in non-MS populations, although further testing is needed.
 
A device that aids in erections is the vacuum tube and constriction band. With this method, a plastic tube is fitted over the flaccid penis, and a suction pump is operated to create a vacuum that produces an erection. A latex band is slipped from the base of the tube onto the base of the penis. The band maintains engorgement of the penis for sexual activities.
 
More invasive forms of treatment for erectile problems include the surgical implantation of a penile prosthesis. A penile prosthesis is a mechanical device designed to give a man with erectile dysfunction the option of having an erection. However, there can be significant side effects and complications with implant surgery. Because many other alternatives for erectile dysfunction have become widely available, this option is utilized only as a “last resort” for men in which less invasive procedures have failed.
 
For Women
 
Treatment of orgasmic loss and sexual response
 
From a research perspective, treatment of orgasmic loss in women with MS has been poorly studied. From a clinical perspective, treatment recommendations depend on developing an understanding of what primary, secondary, and/or tertiary factors are contributing to the loss. For example, if sensation is disturbed in the genitals or lower body areas (a primary symptom), it is essential to develop a sensory “body map” with one’s partner to explore the exact locations of pleasant, decreased, or altered sensations. Developing a “body map” requires one to systematically touch the body from head to toe (or all those places one can comfortably reach). By varying the rate, rhythm, and pressure of touch, areas of sensual pleasure, discomfort, or sensory change can be noted. Altering patterns of touch in subsequent exercises is then conducted to maximize pleasure. Instructing one’s sexual partner to touch in a similar manner sets the stage for rediscovering sensual and erotic pleasure. As with the treatment of all sexual symptoms in MS, experimentation and communication are the keys to maximizing sexual response and/or pleasure.
 
If diminished genital sensation occurs, stimulation can be increased through oral stimulation or via mechanical vibrators, which are widely available by mail order. Increasing stimulation to other erogenous zones, such as breasts, ears, and lips may enhance the orgasmic response. Increasing cerebral stimulation by watching sexually oriented videos, exploring fantasies, and introducing new kinds of sexual play into sexual activities can sometimes promote an orgasmic response.
 
Painful or irritating genital or body sensations can sometimes be treated with medication. Amitriptyline (Elavil®), carbamazepine (Tegretol®) and phenytoin (Dilantin®) are sometimes prescribed to help manage this difficult symptom.
 
It is not yet known whether oral medicines, such as Viagra, Levitra, or Cialis, are helpful for women with MS. A woman’s sexual identity tends to be more complex than a man’s, so it is not yet clear how helpful medicines that increase blood flow to the genitals will be for women with MS. However, since increased blood flow to the clitoris and labia occurs during the sexual response, it is possible that enhancing blood flow via oral or topical medicines, or via a vacuum device, will enhance sexual pleasure.
 
Coping with lowered libido
 
Loss of libido, or sex drive, is the most frequently reported sexual symptom among women with MS. Currently, there are no medicines that are effective for this symptom. There have been case reports that have addressed this topic in MS. In one, sex therapy in combination with MS symptom management and communication skills training, reported anecdotal success in women with MS. Behavioral retraining that targets redevelopment of sexual pleasure in the absence of libido has been reported. The rationale for behavioral retraining is that partially differing neural pathways mediate sexual drive and sexual pleasure or response. In the absence of libido, a different set of behaviors and attitudes are required to stimulate sexual pleasure. In other words, the nervous system is often sufficiently intact to respond to sexual stimulation even when libido is absent. The issue thus becomes one of sexually “getting started” without libido, which is taught via behavior therapy.
 
Coping with vaginal dryness and tightness
 
Similar to the erectile response in men, vaginal lubrication is controlled by multiple pathways in the brain and spinal cord, some of which may be compromised in MS. The simplest method to cope with vaginal dryness is to apply generous amounts of water-soluble lubricants (e.g., K-Y® Jelly, Astroglide®, Replens®, etc.). However, most women who use lubricants do not use sufficient amounts. If dryness persists with lubricant use, more generous dosing is needed.
 
Communication with your MS health care team
 
Fatigue, spasticity, weakness, bladder/bowel disturbance, depression, and cognitive changes are MS-related symptoms that have been widely reported as impairing sexual response. There are numerous protocols and medications available to manage these symptoms. Communication with an MS health care provider on aggressive symptom management with sexual health in mind can be helpful in restoring sexual function. Although treatment of these symptoms frequently eases associated sexual complaints, it is necessary for the MS health care provider to know that sexual function is an ongoing concern. For example, some anti-depressant medications have excellent efficacy in treating symptoms of depression, but can also cause impairments in libido and capacity for orgasm. If the person with MS and the health care provider have had an open dialogue about sexual function, appropriate medications and/or dosing strategies can be implemented to minimize or eliminate the sexual side effects.
 
In coping with sexual dysfunction, it is very important to include the sex partner in the discussion when a long-term relationship is present. This enhances intimacy by allowing both partners to learn and explore together. If partners feel inhibited about talking through these issues, counseling with a mental health professional who is knowledgeable about MS can prove helpful.
 
For more information
 
The American Association of Sexuality Educators, Counselors, and Therapists (AASECT) certifies professional sex therapists who have met their criteria for minimum educational and clinical experience standards. AASECT-certified therapists also must agree to adhere to a code of ethics. Although many highly qualified sex therapists do not choose to join AASECT, you can obtain a list of AASECT-certified sex therapists by writing to AASECT, P.O. Box 1960, Ashland, VA 23005-1960 USA. 804-752-0026. Email: aasect@aasect.org or visit www.aasect.org.
 
Enabling Romance: A Guide to Love, Sex, and Relationships for the Disabled. By Ken Kroll and Erica Levy Klein, 1992, No Limits Communications.
 
There are a number of discreet catalogue services that sell sexually oriented materials and promise anonymity to their customers. Some include:
 
Eve’s Garden International, Ltd. 119 W. 57th Street, Suite 420, New York, N.Y. 10019-2383., Phone: 800-848-3837.
 
Good Vibrations, Inc. 938 Howard Street, San Francisco, CA 94103, Phone: 415-974-8990; Phone: 800-289-8423.
 
(Last reviewed 7/2009)