Intimacy and Sexuality Issues in Women With Multiple Sclerosis – MS

Some are direct effects of MS on sexuality, and these can include changes in sensation, which can include either decreased sensation or painful sensations in the genital area, decreased lubrication, decreased sex drive, decreased ability to achieve orgasm, and are sometimes related to specific symptoms.

There can also be indirect effects of multiple sclerosis on sexuality, and these can include things like medications. You know, a common symptom of MS is oftentimes people will experience a clinical depression sometime during the course of their illness. And in fact, the medications that we use to treat depression also have sexual side effects. So again, that can influence sexuality.

There can be a self-image change. I think in general, if you think of a sexy woman, I bet the first thought you have in your mind is not a woman using a cane or a wheelchair or something like that. The image that we have is a woman with a perfect body, a 20-something, and that’s just not the real image in the world today of women, and particularly women with MS. So, I want you to think about taking care of your body and thinking of yourself positively. That certainly goes a long way in our self-image of yourself.

And finally, there can be role changes in women with MS. Maybe you are not able to run the household. You’re very involved with parenting, or maybe parenting has become more difficult. Maybe you actually need care, and so you don’t think of yourself as a lover. And that can influence our own image of ourselves. And finally, communication, both with your healthcare team and your partner, are so important. I’ll talk about that later on.

There are some specific symptoms of MS that can certainly have an influence on sexuality. The first one is fatigue. And isn’t that the number one complaint of people with MS? Those of us who are living with the disease know that the fatigue is really a common problem. And of course, fatigue can influence how you think of yourself sexually, and many people with MS put sex at the bottom of the list in terms of priorities. So again, maybe making sexual activity important for you can make a difference. Also, finding the right time. For many people with MS, they find that the morning is a better time, and looking for positions that conserve energy can also be helpful in managing fatigue.

Bladder problems are common with MS. I always feel very comfortable in these meetings because we have lots of bathroom breaks, right? And incontinence and urgency is sometimes a problem for women with MS, and so dealing with the bladder symptoms that you may have may be important for you. And this can include limiting fluids perhaps before sexual activity and making sure you have an empty bladder before you have sexual activity. That can make a big difference.

There can be weakness and spasticity. Spasticity is that feeling of stiffness. So if that’s a problem for you, compensating in terms of positioning can help. That can make things more comfortable. Timing your anti-spasmodic medication. Letting your partner know if you’re having weakness or that stiffness and if you need help. That can make such a difference. And finally, there can be sensory changes, and those can include some of the things I’ve discussed already.

In terms of managing specific sexual changes that you might be experiencing, I’d like to talk about just a few of those and what you can do. For decreased sensation, which can happen, increased stimulation can be very helpful. And again, we’re going to talk about things that make you feel a little bit uncomfortable, but increased sensation can be helped by more stimulation, and that can either be oral stimulation, manual stimulation, or perhaps considering the use of a vibrator that can actually provide more stimulation.

Some women actually have painful sensations, just like you would have a painful burning sensation in your leg. You may have that in the genital area. So, there are medications to treat that type of painful sensation, usually anti-seizure drugs that can really help in relieving that pain.

For lubrication, vaginal dryness is often cited, and using a water-based lubricant like KY liquid or Astroglide — doesn’t that sound very sexy? That can be helpful if that’s a problem that you experience. And many women experience a decreased sex drive and a decreased ability to have orgasm. And so while there’s not just one tip that I can have, I can tell you that there are a few things that you can do.

One, remember, sex or intercourse is not the only way of having a satisfying sexual relationship. I think this can include other forms of sexual activity and even self-pleasure that can help maintain a more satisfying sexual experience. Consider the things like flirting and cuddling and kissing. Those are an important part of being close to our partner and can make a big difference.

You may want to consider fantasy and really get your mind on your side. Use the things that work to help increase your own desire. And sometimes allowing yourself to think sexual thoughts may lead to arousal but ultimately will lead to greater desire. You may also want to explore counseling. That can be helpful sometimes if you’re finding that again you can’t get your mind on your side. And as Dr. Lynch mentioned, Viagra is actually being studied in women with MS to actually increase blood flow to the clitoris, which may, in fact, increase sexual pleasure and increase sexual stimulation. So, that might be helpful.

So, what can you do to help yourself? [Slide 13]. I think there are several things that you can do for yourself. First, learn as much as you can about the symptoms of MS as well as the symptoms of sexual dysfunction so that you can be more educated and learn more what you can do for yourself. And finally, learn to work with your healthcare team. There are a whole team to help you in dealing with all of your symptoms of MS, and this can include your neurologist, who is so knowledgeable about symptoms and helping you manage your symptoms, your urologist, your gynecologist, your psychologist that can help you. Use your team, and you have to be the one to ask the questions. Oftentimes, it’s not your healthcare team that’s going to bring up sexuality. And again, when you bring your list of questions in to the doctor, put that at the priority of your list. If that’s important to you, make time to talk about that when you see your healthcare providers.

And what can you do to communicate with your own partner about sexual dysfunction? There’s “pillow talk.” There’s a talk radio show in St. Louis called “Pillow Talk,” and it’s a late-night radio show that they play love songs and dedications, and I really enjoy listening to that radio show. And when I think of “pillow talk,” I think of that emotional closeness with a partner. I think of sharing what feels good, sharing feelings and fears. Communication is so important. And we can’t really have a satisfying intimate relationship without that sharing, so that is important. And focus on sensuality. You know, there is a lot to be said for cuddling and foreplay and kissing and those loving gestures that led us to the intimate relationship in the beginning. That’s important, too.

And finally, being sexy. You know, what is the number one, the sexiest part of our body? It’s right up here, isn’t it? It’s in our mind. So, getting your mind on your side is so important, and feel free to be open and to incorporate fantasy and sex toys and videos, things like that that may help you in increasing your arousal and your desire. Don’t be afraid of that.

And you may want to consider something called the body-mapping exercise, which is an exercise that you do with your partner to help you and your partner understand what feels good to each of you, what’s not feeling good, without the pressure of sex. So, there are lots of ways that you can communicate with your partner more effectively.

Finally, not on the subject of sexuality and intimacy, I want to share with you as women with MS. We need to not focus just on the MS itself, but we don’t want to forget about the preventative health care that we need to help manage our lives successfully as women with MS. That includes regular pelvic exams and Pap smears, breast exams and mammography, and all of those regular checkups that we need to successfully manage our lives and stay healthy in living with MS. So, I hope tonight I’ve been able to give you some tips, some ideas that might help you in managing your disease and live your life more positively with MS.