Redefining Intimacy in People with Multiple Sclerosis
If you don't believe in the importance of good sex within an intimate relationship, just check out the cover of any woman's magazine in the supermarket. For couples that are coping with multiple sclerosis (MS), both physical symptoms and their emotional repercussions can make a healthy sex life challenging.
Below, Fred Foley, PhD, director of psychosocial services at the Gimbel Multiple Sclerosis Comprehensive Care Center in Teaneck, N.J., talks about how couples can reclaim an intimate relationship by learning about new ways to enjoy each other.
What is multiple sclerosis (MS)?
Multiple sclerosis, or MS, is a chronic disease of the central nervous system where the myelin, which is the insulation-like material that wraps the nerve, is attacked and destroyed by cells in the immune system.
As this process unfolds, the cells in the brain attempt to repair the damage, but since they can't repair it completely, lesions develop that block nerve conduction in the brain and spinal cord. This results in clinical symptoms, such as vision problems or the ability to coordinate the legs and arms.
How common are sexual problems in MS?
Multiple sclerosis can cause a variety of symptoms and interfere in a variety of bodily functions. About 80 percent of persons with MS describe some kind of sexual problem at some point in the course of their disease. That may sound very high, but in the general American population, 35 to 40 percent of people report at least occasional sexual dysfunction.
What kind of sexual dysfunction occurs?
When we were first studying sexual dysfunction in MS, we realized that there could be many different types of dysfunctions. The first category is primary sexual dysfunction, which includes problems directly due to lesions in the spinal cord and the brain. A typical primary problem would be a section of the spinal cord that would cause complete lack of sensation in the pelvic area. The second type of sexual dysfunction is secondary sexual dysfunction, which are problems that affect sexuality that are indirectly caused by MS symptoms, such as a tingling or burning sensation in the arms or legs that interferes with your pleasure when your partner touches you. The third type of sexual dysfunction is tertiary sexual dysfunction in MS. That includes psychosocial and cultural aspects of sexuality. For example, if MS affects a woman with body image concerns, it could take the joy out of giving and receiving in a sexual relationship. It could be very inhibiting.
What sexual problems do women with MS experience?
The studies on the frequency of sexual problems in MS show that women complain mostly of a loss of libido or sex drive. That's the number-one complaint, followed by vaginal dryness and loss or impairment of the ability to orgasm. Since MS can also impair the nerves that nourish the vagina and vaginal tissues, then there can also be a loss of muscle control and ability to respond to sexual stimuli. Also changes in sensation in the genitals can occur in both men and women.
How is vaginal dryness treated?
Once we have made sure there is no other problem or medication impairing sexual function, we would advise the woman to use water-soluble lubricants, such as K-Y Jelly or Astroglide, but not petroleum-based lubricants such as Vaseline since they can sometimes leave residuals that can lead to bladder infections.
When we were first advising women to use lubricants, they would sometimes come back and say "It's not working." I finally began asking them how much they were using and realized they weren't using adequate amounts. If there is a significant amount of dryness and irritation present, you'll have to use a lot of the stuff. I recommend incorporating the application into the love-making, into the play; have your partner warm it up to body temperature for you.
How is low libido in women treated?
We recently completed a study that found that women's concept of sexuality and their sexual identities are more complex than that of men with multiple sclerosis. So we often make our interventions for women more relationship focused and make sure that here is a counseling component.
What kind of sexual problems are seen in men?
The most common complaint sexually for men with MS is erectile dysfunction. That is, the inability to develop and maintain an adequate erection for sexual behavior. There are also other sexual problems that men have such as impaired sensation and loss of the capacity to orgasm.
How is erectile dysfunction treated?
The first line of treatments for erectile problems are the oral vasodilating medicines medicines called phosphodiesterase inhibitors such as Viagra, Cialis, Levitra. These affect an enzyme in the erectile tissues in the penis that allows one to maintain an erection. They've been shown in clinical trials to have a satisfactory clinical response in men with MS. They don't work with women because you can't treat sexual dysfunction just by increasing blood flow to a woman's pelvic area, the way you often can in a man.
How can people cope with changes in sensation?
If we find that sensation is diminished in the genital area, the solution is to increase stimulation to that area. In woman, oral sex is sometimes more stimulating than traditional vaginal penetration. For vaginal intercourse, we may advise partners on how to change their sexual techniques to provide more stimulation or to use vibrators.
For people with altered sensations what formerly felt like a light touch or pleasurable sensation to the genitals can now feel like burning or itching, kind of like the sensation you would feel if your foot fell asleep. We sometimes advise patients dampen the sensations either with medicines that can be prescribed by their MS physician or by applying a cold pack to the genital area.
How can other symptoms of MS interfere with sex?
Spasticity is a fairly common symptom that could impair the ability to position oneself for sexual activities. Education about changing the timing of when they administer their antispasticity medicines frequently resolves the problem.
Bladder dysfunction is a very common MS symptom. Some individuals, particularly women, tend to lose bladder control when they have an orgasm. So advising them how to how to deal with their bladder issues whether through medicines or self-catheterization or going to the bathroom prior to intercourse, or just educating their partners and themselves to approach it together goes a long way in reducing the embarrassment and the emotional difficulty.
Since many people with MS experience pain, we want to make sure that we properly assess and treat it since most people aren't feeling particularly sexy when they're in significant pain.
How can men and women cope with difficulty achieving orgasm?
Difficulty achieving orgasm is a fairly common complaint in both men and women in MS. It can be caused by many different problems. We may want to review the medications that the person is taking. While the disease-modifying medicines in MS do not cause sexual side effects, some of the symptomatic medicines for depression or bladder dysfunction, in particular, can cause some sexual problems.
If that doesn't work, counseling can help them accept what they cannot change and learn how to enjoy their partners even with reduced or altered sexual functioning. The capacity is always there for people to give and receive pleasure no matter how severe the disease.
To what degree does the disease make it difficult for people to remain intimate with each other?
Maintaining one's intimate relationship requires flexibility, creativity and imagination, otherwise life can be all work and no play. In a couple I recently worked with, the man had MS. He had severe MS-related fatigue, so by the end of the day he had very little energy for sexual activity. In the past, the couple would have sexual activity in the evening. Counseling taught them to be a little more flexible and to engage in sexual and intimate activities at other times.
When should couples seek help?
You need to get educated about the nature of sexual problems in people with MS and become empowered to approach your MS health care team. Be creative with your partner and yourself with trial and error strategies. We find that if you talk about sex and intimacy with your health care team and your partner, you have already overcome the single biggest obstacle to getting adequate treatment for sexual problems in MS. |
