If you have multiple sclerosis (MS), you may find it difficult to talk about problems with intimacy. Sex, after all, is an inherently vulnerable part of life. Moreover, you might think you’re not even supposed to talk about your sex life.
“I haven't brought this up with my doctor because it's personal and embarrassing,” wrote one MyMSTeam member. “I can’t enjoy sex like I used to! I know a part of a happy marriage is a happy sex life, but I don't know what to do.”
Sexual problems are common with people living with MS. Fortunately, there are ways to overcome challenges surrounding intimacy, including medications, sex aids, and changes to your routines and environment. Communication, too, is key — both with your health care provider and your partner.
Sexual problems are incredibly common for people with MS: Up to 72 percent of women and and 91 percent of men with MS report changes in their sex lives. Experiencing sexual dysfunction as a part of MS isn’t surprising: The condition affects the nervous system, which is intimately associated with sexual function. When your brain registers emotions such as attraction, it sends signals through your spinal cord to your sexual organs. If these nerve pathways are damaged by MS lesions, your body literally doesn’t get the message that you’re ready for sex, affecting arousal and your ability to orgasm.
In addition, other MS symptoms can make experiencing intimacy difficult. You might feel tired or numb, or you may have trouble with stiff, tight muscles (a problem called spasticity).
Moreover, MS can also cause emotional changes that lower your sex drive and strain your intimate relationships, such as increased stress, depression, anger, and worries about your attractiveness and body image. People with MS also may feel like their partner has slipped into the role of a caregiver, rather than a lover. If you no longer feel desirable, your self-esteem may suffer, which can damage your relationships
On top of all these issues, side effects from some of MS symptom treatments — such as antidepressants — can lower your libido and hamper your ability to orgasm.
Erectile dysfunction is a commonly reported side effect of MS. Other common problems include decreased sensation and problems with orgasm and ejaculation. Many members of MyMSTeam have spoken frankly about dealing with these sexual difficulties. “As a man, I know I need help if my numbness goes as high as my waist, which obviously prevents me from becoming aroused. I feel guilty,” one member said.
Anti-erectile dysfunction drugs — such as Viagra (sildenafil), Cialis (tadalafil), and Levitra (vardenafil) — are often used to improve sexual responsiveness, although these drugs may not be appropriate for people with a history of heart disease or those taking nitrates. MyMSTeam members reported that these drugs have helped them with sexual activity. “For most men (and I am one who has tried this), Viagra is helpful,” a member stated.
Another said, “Cialis has been helpful, especially in the ego department!”
Injectable drugs or implants are an option for individuals who can’t or don’t want to use more common erectile dysfunction treatments to improve sexual function. “I use Caverject — you inject the medicine and achieve an erection for two to four hours,” a member wrote. “I tried all the erectile dysfunction pills, but my body got used to them and they stopped working.”
Some intimacy issues are less obvious than others. One MyMSTeam member asked, “Does sex drive or ability to have and/or enjoy sex affect men with MS only?” Another answered, “Of course not! Women do, in fact, have a sex drive, and MS can affect you, too.”
The most common intimacy problem reported by women with MS is an inability to orgasm. MS can affect vaginal and clitoral sensitivity. As one MyMSTeam member describes it, “Basically, I cannot ‘finish’ during sex, and then the lower half of my body either gets really shaky or numb.”
Using sex toys, such as vibrators, can provide new sensations that increase arousal. “I find toys to be helpful,” one MyMSTeam member says. “I believe you just have to try different things to see what works for you.”
MS can cause a loss of sexual desire altogether for some. “For me, it’s hard to even want to have sex. I feel bad for my poor husband. I seem to have zero drive anymore,” a MyMSTeam member said.
People with MS may also experience vaginal pain or a lack of natural lubrication during sex. Using lubricant can help ease vaginal pain. To combat dryness, buy a water-based lubricant (easily found at your local drugstore or online) and use generous amounts. Avoid using petroleum-based products such as Vaseline — because these products are not water-soluble, they’re hard to wash away, and they can cause infections.
People with MS also find that spasticity and muscle weakness can interfere with intimacy. Stretching exercises can help increase flexibility, and medications can treat muscle spasms. If your spasms are focused in a certain area, like the knees, Botox injections may help improve your quality of life inside and out of the bedroom. Additionally, simply changing positions or using (or not using) pillows or bolsters can help, as can oral sex.
Some MyMSTeam members report that keeping the room temperature cooler during sexual activity can help prevent post-sex spasms. “You could be overheating. I crank the air conditioner up or run a fan, making sure the room is cool before sex,” wrote one member.
“Try foreplay in the tub or shower,” suggested another. “The water should not be warm, just as cool as you can both tolerate.”
Some people find that concentrating on intimacy without the goal of orgasm helps them feel less pressure. Simply touching each other can keep erotic connections alive. “Use a lot of stimulation, foreplay, imagination, and patience,” a MyMSTeam member advised. “Things will not be as spontaneous as they once were, but remember, if you don't use it, you'll lose it.”
You shouldn’t be afraid to speak about your sex life and needs with your health care providers. You might feel that your question is embarrassing, but your neurologist is trained to know about how the human body reacts to MS — in every way. As one MyMSTeam member said, “Your doctor has probably dealt with sexual questions before. You'll probably feel a whole lot better after discussing the matter.”
Even more importantly, don’t be afraid to communicate. “Talk openly with your partner,” a member suggested. “Her just knowing that you have so much concern for and about her will do wonders!”
Without communication, you will never know what works for you.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 166,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Has MS affected your sex life? Do you have tips for experiencing intimacy with MS? Share your experience in the comments below, or start a conversation by posting on your Activities page.