This Is MS Multiple Sclerosis Community: Knowledge & Support

I couldn't find any threads here after searching the words "Sex" and "Sexual". I mean there were threads, but none that seemed to be specifically about how having MS effects sex.

Obvioulsy sex involves the nervous system and obviously this can impact all sensations, including sexual ones. I can see where this could be a big topic and I invite comment. But, mostly I have a question that stems from a personal observation.

For us, the intensity of sexual activity seems to correlate with inceased disability the following day. While it is easy to think that this is related to heat, since we all know about the hot bath test, etc. I have to wonder if there might be some other impact that sexual activity may be having on MS. Like all concerns with sex, the fact that folks are less open to talking about it, leads to speculation and often inaccurate perceptions. I'm hoping by asking this, folks can share ideas and feel a little more open to thinking about the fact that this impacts a lot of us. We come here to TIMS to talk about the ways MS effects us in part to know that it's not just "me". I'm sure many of us could feel better knowing that we also share many of the same sexual frustratons with MS.

My question today is simply, do you have increased disability after sex? and if so, have you figured out any ways to help deal with it? Do you think it's simply a function of body temperature like the hot bath test, or is there info to suggest another cause?

Ken

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Ken,

Good topic. One of my favorites . I have slightly increased disability for about the next hour or so, like after I exercise, but not as bad. I usually feel so pumped up that I just had sex that I don't notice probably as much as I notice fatigue after exertion. It is a huge self esteem issue for all people, but seriously so for people who always have it hanging over their head that they could eventually lose the ability. I find that we have wwaaaay more sex during the day than we ever had. Sex was always a thing that was done after everything else was done, kids in bed, last activity. Doing it like that was becoming hard since I'm so wore out at the end of the day. So now we have plenty of daytime sex. It's all changed for me, but I have to keep trying. I don't have ED yet, but I have anorgasmia, or inability to achieve orgasm.

So to your point, I do get wore out, after all it does require exertion, but not going into the next day like exercise or having a long day at work will do.

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Ditto on all of Lew's points. He and Jeff are in a very similar MS pattern, with bladder issues, fatigue and all that goes with that. Since you're a partner like me, Ken...I've found that I have to be REALLY sensitive to Jeff's moods and energy levels, by having the antennae out. Jeff works at home, we're able to take daytime hours for each other, which has been really helpful. He can get a catnap after sex. His energy level is usually better afterwards- the endorphin rush helps his mood. No change in his disability, and his spasms are better after, but we do turn up the airconditioning!

Hope some of the gals with MS log in and give you feedback. Like I've said before, Kim's a lucky woman.

AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

zinc for boys, don't know about girls. i don't have any post-sexy issues in particular. but given that yer average ms-y folks have less zinc (see post boys girls zinc ms or something like that), and given that semen is zinc-y, it's a poss.
i have been confused for a while re: why we don't have a dedicated sex discussion topic. we're out in the open about everything else, why not that.

I have also asked my wife to be much more boisterous about initiating it. She never was shy, but she never had much of a chance to initiate since I was always the typical, sex-obsessed guy until the anorgasmia came on. Now my drive is a little bit diminished, but I'm always up for her if she wants to so I always tell her to meet me at the door with some lingerie on and a viagra (like I said, no ED, but when it takes like 1/2 hour to get your cookies; if I get them at all, it helps for lasting power) if she's in the mood and I will always at least attempt. It's so important for us to maintain as much of our sexual identity as we can. I need to clarify that; WHILE we can, since there are some of us for whom sex isn't possible. But while you still can, you need to. At least for me it's a huge mood booster. I thank you for opening up discussion about this. In an 'all parties healthy' relationship I think it's part of the three legged chair of marriage with trust/love and money being the other two. if one gets knocked out, it may fall. I have always firmly believed that. However, in the case where one of the legs has been damaged, I think it's important to keep the comm. lines as open as they can be.

Lack of sensation is huge, but don't forget our biggest sex organ is our brain. I thought the anorgasmia (I guess you should call it dysorgasmia since I can sometimes still eek one out) was the end for me. Boy was I wrong. I understand this can be much more common in women. Even though I don't get my secret toy surprise with every box, I look forward to it no less than I ever did. It's much more about sharing and actually loving each other and being emotionally intimate. I was raised to 'get laid as often as possible'. Going through sex like we do now is something we should have done many moons ago when healthy. I mean we had a great sex life, but I never allowed it to tap into my emotional state like I do now. It's also huge for my self esteem. Huge. For me to still be able to have my wife look at me as her husband and not a patient (I'm not at that point, but you think about it) is enormous. You always want to be perceived as a lover and a man, not a patient. Just knowing I still turn my wife on is important to me. Once she doesn't look at me romatically anymore, I'll be devastated. I know it's something we may have to face, but I can't imagine it right now and don't want to face that one down until we get there.

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No difference for me, Ken.

Terry (or for this thread, maybe I should spell my name Terri)

I too notice it the next day, but not from strenuous exercise, and I am also not noticeably affected by heat (actually prefer to be warm than cold). I actually feel better the next day from plain exercise.

I noted a post on this site for a hormone called Prolactin (see http://www.thisisms.com/ftopicp-24418.html#24418), and did some research at the time, and found that men discrete it after ejaculation. You can also see on the Wiki for its effects: http://en.wikipedia.org/wiki/Prolactin
Which would indicate it to be a good thing (in itself). However, I am sure I actually feel worse for wear the following day. Clearly there is something else going on as well.

I'd have an increase in symptoms for an hour or so after sex, a bit like going to the gym, but SO much nicer! When my legs were bad a few years ago I used to get spasms during sex, most inconvenient, but hubbie and I are so used to each other it wasn't an issue of embarrassment or anything.

I wouldn't have an increase in symptoms the day after sex though.

TBH though MS fatigue often stops my hubbie and I ever getting around to it. My body aches, my right side starts feeling like I've lost layers of skin when he touches me, so finding time for sex when I'm not too shattered is difficult.

I once had a relapse that made exactly my whole right side lose feeling - I was completely halved. That put me off sex while it lasted because it was just so upsetting trying to deal with the difference in sensation.

I'm not sure about anyone else, but anything overly physical lets me know about it the next day. I do however believe that pushing oneself past their physical limits always, eventually, makes you feels better. I'm putting sex in that category. I agree with Lou that by early evening/night it takes me about 30 seconds to fall asleep, a bit of a mood breaker. Morning and daytime sex has become standard but I have to say, unfortunately frequency has decreased. When I lose the ability altogether I will finally give in to super depression.
Take care and keep workin it!
Lars
PS I have to add that I think my wife is some how reluctant to be too physical for fear of hurting me, pain is a major issue. I've tried to explain how OK I am with that particular pain!

Great topic!
I suffer bouts of guilt over feeling sexually "demanding" - I hate to add to fatigue. I have been running my own experiment and I think the emotional positives must out weight the physical stuff. Robbin has ED (cialis works for 3 - 4 days on him!) and he has diminished sensitivity so he doesn't often orgasm and that really killed me for a long time. Communication is everything. Bless his heart he would have to be feeling horrible to deny me. It's hard to be the initiator just not a role I'm use to.... we talk alot. He has a really hard time with the ED and feels like having to take a pill is a major diminishment of his manhood. He gets very depressed about this. I tell him it's nothing to me - I know where his intention is. The emotions he goes through sometimes are hard. I usually do most of the 'work' since he does tire easily, and as was said by Loobie - the sex we have is so much more emotional and worthwhile. Savored vs. taken for granted. From a womans perspective - it scares me thinking of a time we can't be intimate in that way any more. It scares me when he's depressed and talks like he doesn't care about that aspect of a relationship (I know it's his fear talking).

Bottom line: be creative and sensitive and the sex that is planned, relished and savored is more fulfilling and restorative than all the hot, spontaneous sex you remember pre DX. Sex in the AM seems best and be the least tiring.

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partner diagnosed Feb '08
Started on Copaxone switched to Betaseron,
supplements (working on diet!)

And one other thing we all have to keep in mind. The entire time all this bullshit is happening.........we are also getting older. Not one foot in the grave yet, but stuff could have been slowing up a little anyway. Not sure since this started when I was 35, but time is passing as well. I mean I was already experiencing the 'not ready and at attention' once the idea of having sex is verbalized so we were already going through a little age stuff anyway. I mean it used to be that my wife would hang her pants on the bedpost and there was no touching required for me. I don't think that was MS before I realized it, I think that was not being 18 anymore, so I think some of the stuff we could also be experiencing just due to aging. At least that's what I tell myself to feel better.

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I'm glad thjat someone raised this topic.

The biggest effect that the MS has is the fatigue..... if I can stay awake long enough then all is good. I do have increased symptoms for a little while after, either that or the sex is so good that's what makes my legs weak & wobbly!

ever since i fixed my zinc deficiency i have been waaaay more interested in sex. fun times

Jimmy wrote:



As you are unmarried I assume you're talking about romantic novels rather than the real thing. If not, you bring shame on fellow Canadians such as me.

Harry.

burn with shame, burn with shame