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A sexual problem NONE of the articles about MS and intimacy discuss.

I have a WONDERFUL lover who has MS, and we have been together for almost 9 years. We both care for each other - I provide care for her body, and she is understanding with my atypical mental functioning - and we are pretty close to perfect together.

We have developed a sexual problem which is kind of heart breaking. I am not expecting that someone will be able to come up with a solution, or refer me to an expert who knows how to treat this (would be wonderful if there were such a thing, but I am trying to be realistic). I guess I want to put this out there because I have gone through articles about managing intimacy with MS, and nothing even remotely like this is even hinted at, much less discussed. Such articles invariably talk about failure of sexual response due to the disease - inability to experiene arousal, preparatory sexual response (e.g. erection, lubrication) or orgasm. Our problem is entirely different.

My love is VERY sexually responsive. The problem is that any orgasms she experiences trigger a severe bout of painful spasms within 24-36 hours. Once started, the episode typically lasts at least a full day and night, requiring another day to recover. She cannot bear to get out of bed during this time. The more orgasms she has (I have been blessed with a lover who gets multiple orgasms), the more intense the episode is. Of course, I can't tell you what it feels like, but based on her description and her actions, I will say this - think about the muscle spasms that make you throw up when you are violently ill. Then imagine having that intermittently racking ALL the muscles in your body.

We initially noticed it, and it felt almost as though we were being punished for our pleasure. Sex became more and more seldom; we would usually approach each other again in a kind of denial - she gets those episodes from time to time anyway; surely when it happened after sex it was a coincidence. But as time has gone on, the correlation has become increasingly consistent, and the last time we had sex (about a week ago) the response was so severe that we could no longer doubt it. Our lovemaking was causing her excruciating pain afterward.

Don't misunderstand - this does not end our relationship, nor is the idea of me having another partner even a consideration. I am hers, entirely, and she is mine. If she reaches the point that she is unable to speak or do anything for herself I will still take care of her, as long as I have the ability to do so! But it does hurt to let go of that part of our life together.

Anyway, I just wanted to put this here to let people know that there is another complication that MS can introduce into a couple's intimate life. If anyone else has a similar problem, maybe they won't feel so alone. Maybe enough people will have it to warrant some research and study into the issue. I just thought it was a bit of data which does not seem to be in the current documentation.

  1. Hi, ! Thank you for being so open about your experience. I really appreciate you taking the time to share it because this isn't something we see talked about very often, and I'm sure your post will resonate with others who may have been hesitant to bring it up. You're right that intimacy and MS are often discussed in terms of arousal or sexual function, but not the kind of delayed symptoms you're describing. I'm curious, have you or your partner found anything that helps reduce the severity of the spasms or makes recovery a little easier afterward? Or have her doctors been able to offer any thoughts on why this might be happening or any ideas that could help? We'll definitely keep this in mind as a topic to explore further and see if we can share more information or experiences from others in the community. Thank you again for bringing attention to something that deserves more conversation. Wishing you and your wife the best💜 -Latoya (Team Member)

  2. Hi, ! As you mentioned (and I verified by checking through our archive), there are not articles or conversations about *this* particular issue when it comes to sex and MS. I will say that one of our health leaders, , has written fairly frequently about having a good sex life while aging and living with MS and IBS. She might have some thoughts. I do think it's great that you are your partner have such a fulfilling and gratifying sex life and I do hope you are able to find a cause (and possible solution) to the painful episodes your partner is experiencing.

    I did some digging on a sister site dedicated to Endometriosis and while the author of this article isn't experiencing exactly what your partner is, I thought you might find her insights interesting -- https://endometriosis.net/living/sex-pleasure. I would definitely have her talk with your gynecologist about this issue. Every adult has the right to experience sexual pleasure in a safe, healthy manner (in my opinion) and a knowledgeable gynecologist may be able to offer some thoughts and treatment options for this.

    I do hope you and your partner continue to experience a close, loving relationship outside of the bedroom, but I also really hope you can get to the bottom of this problem and find a workable solution!

    Best, Erin, Team Member.

  3. Hi, Doofenshmirtz, I have had a small both legs version of the spasm. I also have bad spasticity. My Neuro prescribed a med often used in TMJ that helped some. However I noticed the largest improvement after I had back surgery. It was unrelated to MS but significantly impacted the spasms. I know it will never go completely away, but I can live with that. Best of luck! Thank heavens you both have the relationship to withstand this difficulty!LisaWYms

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