Tuesday, February 14, 2012

Sex & MS

The Unspeakable Bits; From A Life With MS

I wrote last month in our introduction to The Unspeakable Bits, that we were going to speak the ‘unspeakable’ on this blog. Well; erectile dysfunction, vaginal dryness, bladder leakage, sexual positioning, inability to attain orgasm, sex and multiple sclerosis. 

How’s that for speaking the unspeakable? 

Sex is a natural, important and - let’s face it - fun part of human existence. We think about it, we save ourselves for it, we abstain from it, we revel in it and we embroil ourselves in discussions of its “proper” place in our society. Sex lives in a unique place in culture as we struggle with the animal nature of the act and the purely human aspects of its affection. Sex is natural, wholesome and a part of a healthy, adult life.

But, like other parts of our “healthy life”, multiple sclerosis can and does take its toll on our sex lives.

There is an excellent primer on various forms of “sexual dysfunction” caused by MS and its symptoms.  Those dysfunctions include, but are not limited to:

  • Loss of Libido 
  • Reduced sensation (or painful, heightened sensation) 
  • Numbness 
  • Difficulty achieving/maintaining erection (for men) 
  • Vaginal dryness (in women) 
  • Difficulty achieving orgasm/ejaculation

Feeling like we’re speaking the unspeakable yet?

How about some of the other symptoms of MS that can wreak havoc on the ancillaries to a healthy sex life?

“I’m just too tired to________” can be a regular part of the day for people living with MS. “I’m just too tired to make love” isn’t a stretch at all. So, Fatigue can lead to sexual dysfunction.

Pain (Yes, doctor. Pain can be a symptom of MS), spasticity, rigidity, vertigo… all of these can keep the flames of passion snuffed. Loss of use of limbs (both legs and arms) can be a significant barrier to sex for both the person living with MS and for our sexual partners (and more on them in a moment).

I’m tempted to add something of a “societal symptom” to our list of sexual barriers – and that would be the barriers around speaking openly about sex.  For many people living with MS the idea of trying alternative sexual positions, bringing toys into the bedroom (let alone ordering/purchasing such things!) and discussing our sex lives with our medical teams are paths not easily traversed.

Right alongside those societal symptoms would have to be our partners’ reactions to us and our MS. 

Time and time again I hear from people whose spouses have gone from lover to care partner to care-giver. It cannot be stressed enough how important it is to hold on to the parts of our relationships that are not MS. For the partners who do most of the care giving, respite care can be an important element in keeping a loving relationship from sliding into a patient and aide relationship.

Each partner must understand the difficulties the other may be experiencing in their life with MS. How we see ourselves and how our partners see us as sexual beings can easily be altered by MS if we allow it to happen.  Like any part of a good, working relationship we may have to consider our limitations in dealing with sex and MS. Before our relationships begin to suffer we may want to seek professional counseling to help us deal with these very intimate issues (see resources below).

Of special embarrassment can be issues of bladder leakage, painful urine retention, constipation and incontinence as they relate to sex and MS.

I read with great pain when I see comments from our community that people have simply given up on that part of their lives. 

If MS makes it difficult to walk, we get a cane, or crutches or a scooter; we do not give up on mobility completely. Why then would we think that some ‘difficulties’ in the bedroom somehow make us asexual beings?

As multiple sclerosis is nothing if not cruel; on very rare occasions MS can cause hypersexual behaviors and sensations too!

As an act of disclosure (and to show that I’m genuinely trying to open the door to this conversation) I have some sexual dysfunction caused by MS and, if I’m to believe my urologist – who specializes in MS and neurologic conditions – I’ve more “issues” to look forward to, due to current levels of damage (and let’s just say they’re not “hypersexual behaviors and sensations.”)

There, we’ve done it. We opened the bedroom door to how MS affects the goings on in the boudoir. My hope is that this will not be a one-way conversation. Now it’s your turn.

What are your MS and sex issues? Do you talk about them with your partner? Do you talk about them with your medical team? Do you hide from them?  Do you fear them?

If you care to listen, I hosted a couple of webcasts on intimacy and sex some time ago with some very knowledgeable MS doctors and therapists. I’d encourage you to have a listen, with your partner, if you’re so inclined.

Next month; we’ll keep this conversation open by opening the bathroom door. In March we’ll discuss MS and the bladder.

Wishing you and your family the best of health.


You can follow Trevis via his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.

For additional information and resources – including referrals to therapists and medical professional in your area – call an MS Navigator at 1-800-344-4867. The Society’s MS Navigators can also provide you with resources related to intimacy, caregiving and sexual challenges related to MS.

Additional information related to sex and MS:
Webpage: You Can...Fan the Flames of Romance
Article: MS vs. Good Sex


  1. Very good article, and sex for a man is sooo important for the self confidence, the inability to "perform" for or please his wife or partner is devastating to the ego. So thanks for covering this. I'm new to this and any other blog, but recent progression of my MS has lead me down a path of thought and conideration of "everything" in my life. Probably more time for thought than I care for or my wife can handle, but it is what it is. My wife having MS as well I have maybe more understanding support than many, so lucky me.

  2. Wonderful article! I see my marriage, while emotionally strong slipping into the passionless void that is the patient and caregiver relationship. I have MS and must say my biggest issues are leg pain and lack of desire. The problem from my husbands end is that he's so afraid of hurting me he's hesitant to touch me, since the slightest touch can send my legs into painful spasms. We used to have a great sex life...I miss it.

  3. My wife is the one with MS but as we all know, it is definitely a shared experience. I am at the point where i am kinds sorta ok with giving up that part of our relationship. I dnot know what else to do but the yoyoness of her energy levels and libido levels are killing my enthusiasm for that part of our relationship. Nothing like being frisky and playful all day only to have her exhausted by nightfall. I dont want her or me to feel like it's a chore, like cleaning the oven. But it has been that way for a while and i just can't do it that way anymore. I'm not giving up on her because i love every inch of her; i'm just hoping this relieves some of the pressure on her and me. I dunno, I could also be delusional. How about this crap sucks either way

  4. as a woman with MS, I really appreciate the plain sincerity and honesty of this blog. for me, I spend a lot of time in pain - which only adds to my symptoms of fatigue and subsequent depression. working full time on top of that, i'm often ready to fall into bed by 6 or 7pm ^_^' which sometimes makes my fiancee feel like I don't want anything to do with him, don't like spending time with him - bc it can be difficult to accept that i'm really so exhausted so early in the evening. another problem, as mentioned above, is how I can be mentally so ready for sex but my body doesn't seem to have gotten the memo - which can end up making the event painful instead of pleasurable...then i'm sore for at least a day after- in that respect and sometimes from my entire body - on top of my "normal" pain. ^_^' plus i experience intermittent urinary incontinence - which i prefer for people not to know about - so on the days i have to wear a pad to protect my clothes i feel overly self concious about having anyone touch me.
    a challenge for sure, but with patience and creativity it's mostly surmountable.

  5. The worst thing any of us can do is give up on the intimacy that sex can bring to us. As a male with MS, I know I am not as physically sexual as I once was and there are more times than I would care to admit that I have problems with performance. What keeps these from becoming a huge issue in my relationship is communication between my partner and me. We are open with each other and instead of feeling shortchanged about the times we would like to have sex and can't, we appreciate the times we can be together.

    There is side of us that has learned to be creative and adapt to the limitations that MS brings. The thing is, we haven't given up on having as complete a relationship as we possibly can.

    1. if learning as much as you can and making the best choices based on the information you have at the time and always leaving open the door for change, isn't making the decision to take certain things out of the picture, for no set time period, a way to steal back some of the power that MS has stolen. They way it is now, is hell on on us both but then again, my body isn't the one being affected by MS. If sex happens, it happens but I can't, any longer, be mad at her for not having the energy or some other physical limitations. It's not fair. She tries, and i really appreciate it, but I can tell when she's not all in. It's the intimacy, the connection, I miss more than the physical act of sex.

  6. What do you think about the relatively new pharmaceuticals that enhance sexual drive and ability.
    I have a thought about it and it is really more about blood circulation than coitus.
    Please share thoughts and experiences!

  7. I feel lucky in that my husband and I have always been able to discuss this issue because it is definitely an issue. For a long time it was primarily because I was just too tired, these days there is a little more too it and now he has health issues of his own which led me to ask one night "what happens when we can't find a way that works for both of us?" His answer "we'll lay in bed holding hands and talk about what we used to do" so as long as he doesn't go completely deaf we will be okay!

  8. I feel lucky in that my husband and I have always been able to discuss this issue because it is definitely an issue. For a long time it was primarily because I was just too tired, these days there is a little more too it and now he has health issues of his own which led me to ask one night "what happens when we can't find a way that works for both of us?" His answer "we'll lay in bed holding hands and talk about what we used to do" so as long as he doesn't go completely deaf we will be okay!

  9. As a man married 27 years, I have learned that while sex is extreme high priority with men... Women care more about relationships. That being said, I am a man with MS and have had my difficulties understanding why I was having some difficulties sexually even though my wife turns me on ? It didn't make sense until I learned about the effects of this disease. My loving and understanding wife helped me to realize that we could still be intamate w/o always having sex. Of course there are things that we can do to overcome any Inadequacies... 1) Viagra 2) Oral 3) Lot's of cuddling.. These have been helpful and fun !

  10. I was diagnosed with MS 2 years ago march 12th and I don't have to worry about sex because my ex wife left me and divorced me. And it is so hard to find someone now because I have MS and can not work so I guess I don't need sex. hehe

  11. Reading this makes me concerned for the future. I was diagnosed a year and a half ago, but I seem to have lucked out in this area. With my first exacerbation I had a tripling of my libido (at least triple) and sensitivity off the charts. It's been hypersensitive at all times, but does get worse during flair ups. It gets to the point of being distracting and embarrassing. I feel like a sexual predator sometimes, haha. But I have a partner that enjoys my strong drive and is more than willing to accommodate me. I have issues with fatigue, mobility, and pain. So those can make it hard to satisfy my unending appetite. I'm afraid of the future because I know I could lose all of this, but right now I consider it the silver lining in the dark cloud that is my MS.

  12. I was diagnosed a year and a half ago, and so far it seems I'm one of the luckier ones I guess. With my first exacerbation I had a tripling of my libido, and since then I've remained hypersensitive. Currently I have a partner that helps me out a lot with my enormous sex drive, but he sometimes has a hard time keeping up with me. During flair ups it gets to the point of distraction and embarrassment. I feel a bit like a sexual predator or hussy sometimes, haha. I'm scared for what the future could bring, it can be frustrating but losing my highly active sex life would be a big hit to my self esteem and happiness. I consider it the silver lining on the dark cloud that is my MS, but like everything with MS it can be painful. It tends to make me uninhibited and outspoken, so I can come off kind of aggressive and clingy. It's hard to make other people understand what it's like to have a sex drive so strong that it can literally drive you crazy. My boyfriend has saved me in some many ways he can never understand, I'm glad he considers himself lucky to have someone as insatiable as me.

  13. Well before I had symptoms of MS, I'd never had an orgasm (that I was honest about) with a sexual partner until I met my husband. In my early years I had given up getting there with a partner, and just kept faking it. Masturbation had been my saving grace, and that was easy. But with my husband, at the beginning we had trouble together because it had *always* been difficult with a partner to reach an orgasm. Yet, unlike previous relations, I felt comfortable enough to be completely honest with him - and eventually things were working great! Even our timing would sync!

    Before I had a diagnosis but after various symptoms started, topped with runs of different medications that made it an issue, I had more trouble reaching an orgasm, so if it didn't happen during, he had fun getting me there afterwards. If it were medication induced, then I was frank with my doctor, and we changed treatment plans.

    However, I've had a rather fast decline symptomatically, and one of them was dryness (various lubricating products helped big time, you can get them at any pharmacy or grocer, even). Then I lost internal sensation around the same time I developed incontinence. I can feel the pressure of him inside me, but as I posted elsewhere, his experience is completely different than mine.

    We've communicated openly and honestly about sex since the beginning of our relationship (approaching 10 years together, married for 8), so that's been a big help all around. He tells me that he can feel the same muscle contractions I've given in the past, though I have no sense of them. He also says that some of the contractions are more intense than before, so that certainly makes me feel better. ;)

    He still tries to get me to the point of orgasm, but I don't feel things working internally. I often get the valium effect or afterglow of what used to follow my orgasms, so I can only assume I've had an orgasm without knowing it, especially when he jokes that I was strong enough to almost bruise or break him, haha.

    In all, with a libido low enough that I have to make sure every once in a while I set my mind to "turned on" and entice him to join me in bed, it makes for a very difficult sex life. He's kind of turned himself off because we've been through so many difficult medical situations there was no time or energy or even thinking about it - long enough now that even he doesn't masturbate often. This, combined with the fore-knowledge that during sex he may be the only 'beneficiary' frequently makes it harder for him to get or stay erect(and I'm betting there's some ego/mind issues due to our situation, and/or potential physical issues on his part that he's not ready to talk about).

    It's difficult, hands down. And it's been a long road in figuring out what's wrong where, making for a tiring (but heroic!) effort on his part in trying to satisfy me, when it used to be so much easier. At some point during these issues, he slowed and eventually stopped making the advances, as he'd gotten so tired of being turned down before we even realized I had issues due to MS.

    We, like the rest of us MS'rs and their significant others, had to come to terms with an ever-changing new normal. Because of that, and because even without a libido I derive some enjoyment still, I feel like it's just my turn to come on to him when I'm ready.

    So without a libido to prompt me, I stick a little note in my online calendar every once in a while, to help keep our sex life in motion. The more I do that, the better things are for him personally, for me personally, for our relationship and intimacy. Since I started that, it's increased our romance and we're sometimes flirting again. It makes for a better quality of life if we at least try - and if we can't get there, that's okay too, since we're already in a position to at least cuddle.

    Touch, in any relationship, is vital, no matter what kind.

  14. I feel fortunate in that my husband and additionally I have regularly had the capacity to discuss this issue given that it is some kind of issue. For quite some time it was in fact usually because I was actually simply too tired, nowadays there is a a bit more too it and now he has health issues of his personal what type of led me physically to inquire about one night "exactly what occurs when you can't come upon a way which really works for both of you?" His reaction "we will lay in bed keeping hands along with talk about what you utilized to do" so when he doesn't go completely deaf we are going to feel ok!

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  15. Every time we discuss this issue with my husband, misunderstandings happen and sometimes it leads to “small fights”. I’ve been reading a lot of blogs like this and even searched for a reputable online pharmacy to treat our problem.

  16. Since a man hitched 27 countless years, I are finding that even while sex is extreme high concern with men... Girls care and attention a lot more information on commitments. That being mentioned, I every day a guy along with MS along with have experienced my issues understanding the reason why I was actually in fact having some problems sexually actually though my partner converts myself on ? It didn't render sense up until I learned in regards to the effects of the disease. My passionate and also knowledge partner assisted me personally to realize that you could continue to feel intamate w/o invariably having sex. Naturally in a bing search motor are things that we are able to do in order to overcome just about any Inadequacies... 1) Viagra 2) Oral 3) Lot's of cuddling.. These have been helpful also as fun !

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  17. It seems like a radically different thing for people with MS to suffer ED their way, so much that even buying generic viagra won't help.

  18. Intimacy and Sexuality is a normal act between partners, and we can’t deny the fact that there are also sexual dysfunctions that some partners do experience. I may have to ask if some lovers also experience sexsomnia?

  19. I was in fact diagnosed a year also as a 1 / 2 rear, thus far it seems I am included in the luckier ones I assume. With my very first exacerbation I had a tripling of my libido, and also because then I've continued hypersensitive. Currently I have a partner which may help me personally personally away a lot with my enormous sex disk disc drive, but he occasionally possess a difficult time getting up with me personally. During the course of flair ups it hits the aim of distraction and additionally also shame. I feel a chunk for example a sexual predator or perhaps hussy sometimes, haha. I'm scared for what the long run can bring, may perhaps feel irritating however sacrificing my highly proactive sex life can be a big hit to my self esteem and additionally also happiness. I think it over the metallic lining on the dark-colored cloud which is my MS, however for example every single quick thing with MS may perhaps feel uncomfortable. It tends which will make myself uninhibited and in addition outspoken, so I can come off of kind of aggressive and also clingy. It's difficult to render other people understand precisely what it's love to have a sex disk disc drive so strong it can practically drive some kind of individual crazy. My sweetheart has got stored me directly in certain several methods he can would not completely grasp, I'm grateful your man vistas himself fortunate to have a person since insatiable since myself.

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