InforMS: What do we mean by sexual dysfunction and how might multiple sclerosis contribute to it?
Pat Kennedy: Sexual dysfunction is a physical change to the way an individual responds sexually and to the way a couple responds to each other sexually. MS can certainly affect that in many different ways. When people ask, “Am I going to have sexual problems from my MS?” they are asking a really big question.
A lot of things contribute to sexual problems. Loss of libido is a common complaint. Some people do lose their desire to have sex. Why is that? It can certainly be from neurologic damage. It can be a response to medication or because of a symptom such as fatigue. It can result from generalized fear and anxiety, it can be depression, and it can be “I have too many bigger things to worry about.” All those other things can get in the way of desire, so you end up not knowing—is this because I have a neurologic problem or because I have a disease that also affects all these other things in my life? It is always such a mixed thing. And, it can be more than one thing at a time.
InforMS: How do you figure it out? And, once you do, what can you do about it?
PK: First, I want to get a clearer picture of what’s going on. I want to know what the problem is from the patient’s point of view. Has it changed, how was it different before, when did you start to notice the change? Was anything else going on at the time you noticed the change? Does it happen all the time or some of the time? Is the problem intensified because of any particular activity—for example, are your children still up and you’re worried that they may come to the door? Is it at 10 p.m. and you’re exhausted, or at 6 a.m. and you’re not a morning person? Is there too little foreplay—and I don’t mean only what we traditionally think of as foreplay. Is there too little emotional closeness in the relationship—which is another kind of foreplay—a kind of taking sex for granted? Have you been told that sexual functioning could be a problem with MS and therefore, it is? Are you worried about urinary leakage or bowel function? Is there pain—and I’m not talking about pelvic pain only, I’m talking about spasticity or pain in general. Do you have hypersensitivity? Do you have a loss of sensation? Are you not feeling things the way you used to? If you are not able to carry through, or don’t want to have intercourse, do you satisfy your partner and feel good about that? Does your partner feel he or she is doing something wrong, and that’s the problem?
You have to go through all these layers to fine-tune your perception of the problem. You don’t do it all at once. You have to get to know someone, and begin to put together some minor changes people can work on, and then you go from there.
When we start to peel away the layers, people sometimes find they can function more adequately than they thought they could. There are many things people can investigate and manage themselves, but it’s a touchy topic and to sit down and talk to your partner is really tough for many people. Talking with someone else is also not easy, but that sometimes comes more easily than talking to your partner. You’re so afraid of hurting their feelings, or they feel inadequate, or you feel inadequate, and everyone gets their feelings hurt.
InforMS: Do you need to talk with your neurologists? If not, whom do you talk to?
PK: The neurologist can look at this to determine if these are new symptoms, because if they are, there may be new lesions and increasing disease activity.
But beyond that, what the neurologist does—that’s the diffculty.
Many of us in the medical profession aren’t equipped to talk about this topic. We don’t have the time, we don’t have the experience, and in many cases we don’t have the answer. Most neurologists, if a patient brought up the topic, would say, “Yes, that is something that can happen,” so the patient doesn’t think they are crazy, but where you send them to get help, that is another story. There isn’t just one place to refer to because the issue can be so complicated.
If you are male and the primary problem is erectile dysfunction, urologists and even primary care physicians can prescribe medication, but you have to rule out other medical conditions that could be causing the same problem. Gynecologists can check hormone levels and screen for other medical conditions in women. You might refer to a psychologist, or therapist of some kind, or a physical therapist. Some of it depends on what the patient perceives the problem to be. It is not cut and dried, it is not so simple as you have problem A and here is solution B. Sometimes you start in one direction, and then, later you change directions.
And this needs to be said: sometimes there is no solution. I don’t want anyone to come away thinking, “Oh, if I had just tried harder, I wouldn’t have this issue.” Sometimes there is no solution. Sometimes people just aren’t going to be able to have a sex life like they used to. This is where you work with someone around how to you achieve closeness and have a loving relationship without having orgasms.
Patricia Kennedy is a Nurse Practitioner and MS Specialist, who is a former program consultant for Can Do MS and a specialist in bowel, bladder and sexual dysfunctions in MS patients.
