Jane (not her real name) is a woman who has had MS for nine years and agreed to share her story with us.
InforMS: Jane, thank you very much for your willingness to talk with our readers about this very sensitive and personal issue. To start, can you give us a little background about yourself?
Jane: I am in my late 40s, I had a baby in 2007, the next year I developed some neurological problems and was diagnosed with MS in 2009.
I was raised by religiously conservative parents who had very strict beliefs about sex. I probably never had a very strong sex drive because it was something I had to stay away from for so long, but I do enjoy sex. I was responsive to my husband and comfortable when I wanted to have sex, but I didn’t have a huge need for it. Things started to decline a bit after the baby. We didn’t have sex as often because I had just had a child and had pain from some delivery complications. Then my husband developed some medical problems. And shortly thereafter, MS came along and I lost all the sensation in all my female organs. And our sexual relationship became very difficult.
My husband questions how much these issues, especially my loss of desire, are due to MS. He thinks maybe I just need retraining. He says that I’ve never had a great interest in sex — that I don’t have much need for it. I say all that is irrelevant to where we are today because I used to have sensation and I did enjoy our sexual relationship, probably not as much or as often as he did, but it was pleasurable. I don’t know if other people are different, but if you don’t have much desire to begin with, and you have just been through the wringer for two years with everyone’s health problems, and you have no sensation, it seriously interferes with desire.
InforMS: So what happened next?
Jane: I did some research and discovered that I had every symptom of sexual dysfunction that a person with MS could have. I think there were seven or eight—loss of desire, no lubrication, pain, no sensation — it was check, check, check. I was willing to do whatever to x this, for the sake of the relationship. I wanted us to see a couple’s therapist because this was putting a big strain on the relationship. For me to have a physical relationship, I need an emotional connection. For him, it’s just the opposite — he needs the physical relationship and that draws him to the emotional connection. So we compromised and saw a sex therapist. She had us do some exercises to help with the emotional connection and those were helpful. We saw her for three sessions, but then for some unrelated reasons things went off the rails and we stopped.
I discussed the problems with my regular gynecologist, who said “I don’t know what to tell you, other than it’s important in a relationship so you need to figure out something that will turn you on. Even if it’s watching dirty movies.” And I said to myself, “I don’t have any sensation — there is nothing to turn on.” I felt like she didn’t get it.
About a year later my husband heard of a gynecologist who does a procedure that potentially repairs genital nerve damage, so I went to see her. I wasn’t interested in the procedure but she asked a lot of practical questions; was I on birth control pills, was I menopausal, how about changing antidepressants? She said there were a bunch of possible solutions that were easy to try, so we tried them. They didn’t help. Nothing has been particularly helpful. My husband even got yam pills and we tried all kinds of supplements. But it didn’t fix the problem.
It’s hard. I do want to be physically intimate with my husband because it is important to him, but it’s not physically enjoyable for me. He is very unhappy that he can’t give me any pleasure. It’s sad to him that there’s nothing he can do.
InforMS: When you talk to friends in your MS group, do they have similar problems? Do any of them have solutions?
Jane: Anyone who has ever opened up and talked about this says the same thing—they feel it is really important and they are worried about messing up their relationships, but they have less sexual desire since MS. We all laugh about the fact that we don’t have much interest but we all have to “take one for the Gipper.”
But, one evening the topic of sex came up with four neighbors my age, and of the four, one has huge desire, one doesn’t but her husband does, and the other two don’t have any at all and they are taking one for the Gipper, too. And none of them has MS. I can only think of one friend who has a strong sexual desire and she has since she was 16 and got caught in the back of a car with a boy. I tell my husband this, but he doesn’t quite believe me. He compares me to what he thinks other women want.
