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Erectile Dysfunction:
Another Hard (or in this case, not hard) MS symptom


My first thought while writing this was to do it anonymously. There is terrible shame, embarrassment and turmoil that go with impotence. As I thought about it, I realized that this was one of the major problems about erectile dysfunction. We are often ashamed to talk about it with our doctors let alone our partners. We are unwilling to even admit it to ourselves. Yet it is common for men with Multiple Sclerosis, possibly even higher then 80%, to have this symptom.

Changes in sexuality are not easy at any stage of life. For me, to be 28, spirit certainly willing and then failure in the flesh, was agonizing. I already felt impotent in so many areas of life. I was unable to control the progress of my illness. I was unable to do many of the activities I had enjoyed. I wasn't able to contribute to the maintenance of our household to the degree I wanted. To fail in the bedroom helped to compound those other problems. It was the worst out of any of the other MS symptoms I experienced.

At first, I did not acknowledge it. I was still able to achieve orgasm through self- stimulation even though it took longer and I never got a full erection. I was able to be sexually intimate with my wife through oral and manual stimulation. Again, even during these activities I was only able to achieve tumescence. Those were the times when I could have an orgasm. Other times we both played with it until I was pouring sweat, panting, and at a high state of mental and physical arousal with no release forthcoming. It was difficult to go from being a sexually healthy, virile young man to being an impotent failure. Even though I knew it was the MonSter, even though I knew it was not anything that was my fault, I still felt awful. I felt humiliated and ashamed.

The first step to confronting this is to be open and honest with your partner. My wife and I discussed the problem. We tried other forms of intimacy that did not involve penetration intercourse, ranging from nice (not too hot) baths together to all sorts of manual and oral stimulation. This was great and worked very well. The key to achieving it was open and honest expression of what were our needs. This helped to alleviate some of the problem but not all. We both missed penetration sex. To put it bluntly, we wanted to do it like they do on the Discovery Channel.

My G.P. is a young, attractive, woman. I was nervous about raising the issue with her. Again, it was the sense of shame, of failure, that ED brings with it that is so tough. Nonetheless, I braved the subject and she passed me a few samples of Viagra. That helped things rise to the occasion. It wasn't easy getting the approval from the health insurance company and they will only approve 4 pills a month. You take what you can get in life though. Let me tell you though, I haven't had an erection like that since I was 14 years old. It took care of the problem quite well.

My sexual life has changed but my intimacy with my partner has not. The ole' body including the penis just doesn't work like it used to. I don't have to go into details because I know most of us know what I am talking about. Sometimes we are too tired for sex, sometimes the spirit is willing and the flesh is not. Just be open with your partner and with yourself and it will work out ok. Most of all, know there is NOTHING to be ashamed of. While it may not be natural, for PwMS it is normal.

The bottom line of what I wanted to stress here, is that just like MS as a whole, ED effects and affects everyone differently. How society has made us as individuals, how much self-perception is tied up into our virility, how much the penis is encapsulated in how we view our selves as men makes this one of the most difficult MS issues to deal with. The way MS causes us to discover the "new normal" in our life in general; you'll have to find one in your sexuality as well. Most of all, there is no reason to be ashamed.

As always, more then happy to answer any questions, comments or other.

Jeff Newman, 2003