Sex, Intimacy & MS

Intimacy with a neurological disease can make things interesting, to say the least. At 25 years old I never thought I would have to worry about my ability to have sex with my wife. It's not a symptom of MS many people want to talk about. But I am not scared.

There have been many ups and downs (hehe) along the way. At one point I decided to try the pharmaceutical route — you've seen the commercials. Do they work? Yup! But the side effects that I experienced were uncomfortable. My face was a bright glowing red and I couldn't breathe through my nose. It was awkward to be ready to go while feeling so terrible, and Meg could see my discomfort. It was all around bad. I tried taking a much smaller dose which helped a lot, but not enough.

It isn't just the good bits that cause all the problems either. Low testosterone, numbness from the waist down and perfectly placed lesions are all contributing factors. Having zero feeling in your left arm...picture a 3 legged dog, a bit wobbly. Humor and intimacy don't have to be enemies. Meg and I laugh a lot, probably too much (is there even such a thing?).

At one point I began to worry my MS was pushing my wife away physically. What I now know was my MS had nothing to do with it; I was creating the problem by not talking about it. Note to self: don't make talking about sex weird. Figuring out each other's expectations and limitations has helped me break down the societal norm of what a desirable partner should be. Being able to have a serious conversation about what is or isn't happening is huge. Life changes so rapidly with progressive MS and I've learned that communication is key. I am thankful everyday that I married someone who is completely honest with me.

For now, I am doing what I can to naturally combat this symptom including being mindful about my diet and exercise. Life is constantly changing; we all have things that make the day to day a bit more difficult, but being able to talk to someone who understands and joke about it is some of the best medicine. Having our sex life so rudely interrupted has helped encourage us to connect on a deeper level and experience true intimacy.

(Photo credit: Meghann Prouse, Indie Photographer)


 

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Kellen

Kellen Prouse

Born and raised in the Pacific Northwest. Disabled in 2010 due to progressive multiple sclerosis. I have started the Wheels & Red project with my amazing wife Meg. Wheels & Red is a way for us to share our story with the world. No matter what you are going through you can always find and adventure.

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    24 Comments

  • Rona   Jul 8, 2015 1:07 PM
    I hope ms has helped you guys get closer emotionally. Best of luck to you guys! Thank you for sharing your story.
  • Avatar
    SmartyPants  Jul 8, 2015 1:30 PM
    Loved your article about intimacy, for me with progressive MS at age 59, i am finding that as we age, sex just isn't a bigger driving force the way it used to be. The MS has not affected me as far as sex goes, but as we age, companionship becomes more important. So cuddle, massage, tell your mate you love them, and don't focus so much on what you don't have. I will check out the wheels and red site. My MS stabilized when i quit a very stressful job, only a half paralyzed leg, back pain, sciatica from hauling my affected leg around. I ride incumbent bike twice a day five miles each. staying physically active is a must to keep me well physically and mentally.
    Good luck with your journey, I too from NW, my trigger mono when 15 and i believe the chronic stress from a lifetime of caring for other people. Now i have to concentrate on my well being, avoid toxic people. Live, love and breathe.
  • Avatar
    William  Jul 8, 2015 1:48 PM
    As a 32yr old male with RR MS I too have had almost identical issues from numbness below the waist and lost sensation in my hands and arms, to flushed face from the lovely 'blue' pills. Most annoying thing i found was you want it, have found time for it, so "lets do it", take a pill and wait half an hour then start by which time you've lost the 'i want it' feeling!

    Having a special person who understands and you can talk openly to is most definitely the best thing ever. We are all human, we all share life - don't be scared, be honest!!
  • Kim   Jul 8, 2015 1:57 PM
    Thank you for sharing some of your story, it will help others. If you haven't already investigated options, this site, and others like it, may empower people navigating their love lives with spinal cord disease/injuries: http://www.sexsci.me/faq/

    I read on a transverse myelitis website that some of the fellas pit their feet in ice water to sucessfully achieve orgasm.
  • Thanks for your honesty   Jul 8, 2015 2:47 PM
    I this is a subject that needs more open and candid discussion. It is funny how as teenagers we were at least I was curious about sex, but now with MS it really changes the issues and the discussion and it's really hard. The MS issues remind me about how taking about cognitive issues was kinda taboo or not recognized about a decade ago and now it's commonly recognized and talked about, so glad this is now a more common topic to discuss. Funny how the issues women with MS have happen too and not easily talked about with a partner, some of them unfortuately have to do with bladder. Frankly sharing work arounds with health care providers who can suggest them or even MS friends who have dealt with both male and female with MS issues has been a great help. My MS support group chose it as a topic with a small group that wanted to share info candidly and privatelly and if that can be done with people you've known and trust I encourage it.
  • Liz   Jul 8, 2015 2:51 PM
    I am glad the subject is being talked about. But what about the point of view from a woman who has MS
  • Jenni   Jul 8, 2015 3:14 PM
    Thank you so much for sharing! Although my MS has not affected my intimacy so far, it has caused me to have an ileostomy which, as you can imagine, creates it own issues!! I agree whole heartedly that a sense of humour and lots of honesty can work wonders, and nothing is insurmountable. I'm glad you have an understanding partner and wish you both the best on your journey onwards. X
  • Gemi   Jul 8, 2015 5:25 PM
    I worry about my partner losing interest in me sexually due to my MS. It isn't an irrational fear-the love of my life, my best friend and husband divulged that he wasn't sexually attracted to me because I was I'll. This was before my diagnosis, but we knew that I had fibromyalgia & suspected MS. He couldn't handle hearing about the tests, aches, pains, medicines, procedures, etc....basically the life of a non "healthy" person. He told me how much he loved me, and that he would take care of me forever if he needed to, but there was no sexual desire or romance there.

    So now, working through that hurt and heartache, I'm divorced and have a sweet partner in my life who doesn't feel like the last, but I worry about the toll the illness may take on our romance over time, especially after I've been burned once. I'm always scared to share MS things with him, though I don't really want to hide things. Where is the balance? Can a healthy partner find a sick partner sexy?

    My mind is swirling with questions about this.
  • Gery Simpson   Jul 8, 2015 5:36 PM
    I am a 54 year old man with MS, I had my ED fixed several years ago then my wife died. How do you get past women assuming you have the problem since you have MS?
  • Gery Simpson   Jul 8, 2015 5:36 PM
    I am a 54 year old man with MS, I had my ED fixed several years ago then my wife died. How do you get past women assuming you have the problem since you have MS?
  • Gerri   Jul 8, 2015 7:58 PM
    My sexual drive became almost nil. I had no feeling below the waist and was devastated. My husband didn't know that because I pretended all was good. But, the truth was, sex was a not so fun experience. He realized I was not invested and understood only by his kindness and love. I couldn't really talk about it, but accepted that sex was no longer a driving force in my life. Thank God for my husband's love, his acceptance and his kindness we are still a couple and show our love in other ways. We cuddle once in awhile but not often enough. Our passion has diminished, but our love has not. It is a journey for both of us. I trust in God that he gives me the grace and strength to endure. I pray that my husband will have the grace and strength to endure as well. Not as easy road.
  • Jen Stepp   Jul 9, 2015 2:13 AM
    Thanks for sharing. I do not have much for a network when it comes to MS. Most think it is a muscle issue. It is comforting to know that this is a normal issue that can possibly be overcome. My husband puts up with a lot from me but does not understand everything.
  • Tracy   Jul 9, 2015 6:58 AM
    My hubby and I could have written this. He also has progressive MS, dx in 2005. We get by with laughter, sarcasm, and simply because we adore each other. Hugs to you!!!
  • Carol   Jul 9, 2015 2:48 PM
    Thanks for sharing.

    It is a difficult situation. I was finally diagnosed when I was 61 or 62 with secondary progressive MS. I have my aches and major pains, which sometimes means I have good days and really bad days filled with agony. Then, unfortunately, there are the embarrassing episodes of bowel or urinary problems which come on rather suddenly.

    But, I am always wanting sex and try to let my husband know. I can't get him to talk to me much. So I don't know whether he resents me because I am sick or that he doesn't find me sexy or desirable anymore.

    I am not quite sure what to do. He is not the cuddle-type person or someone who talks easily about their feelings.
  • meech2015  Jul 11, 2015 12:23 PM
    I appreciate your candid honesty, not everyone is comfortable with the SEX issues and MS, and it's not just the Men, us Women deal with the issue as well. Thanks for sharing♡
  • Tom Wilkins   Jul 28, 2015 10:03 AM
    Great article I was just diagnosed in Jan with ppms sex has been difficult at times extremely frustrating for me but my girlfriend is extremely supportive I find my mind wonders worring about stupid stuff I find its important to relax and just let it happen don't feel pressured to perform and after reading this I truely believe humor and open communication is key
  • Jenny   Jul 28, 2015 10:45 AM
    I am a 50 year old woman with MS. My husband is 57 years old. Our sex life is challenging but I know that not all the challenges are because of my MS. Being able to tell each other what you want (or don't want) is really important, but doing it while fumbling around in the sheets can be a downer. My suggestion is to write each other a letter. Try to nclude at least 8 things each. Include what you like, don't like, want to try, etc. On a Friday night get a bottle of wine, and read each other's letters. Ask questions, laugh, give demonstrations. Gentleman ... it doesn't have to be an either or, but I would rather have a man who is fully vested in pleasing me than sustaining the erection (unless it's necessary for his pleasure). Ladies ... I have learned that looking and feeling sexy goes a long way increasing pleasure for both me and my husband. MS doesn't have to rob us of looking our best. Working out 4 days per week for about 25 minutes has improved my appearance and given me flexibility and strength that I thought were gone for good. That makes me more adventurous. We do fumble some but I know he is committed to me in every way, as I am to him.
  • Jk   Jul 28, 2015 12:17 PM
    Look into vesicare. Prescribed for my urinary urgency it had additional benefits where it counted. Feeling has come back again even!
  • Kenny   Jul 28, 2015 2:04 PM
    I am currently going though the same problem. I was dignosed with RR at the age of 8 so i just hit my 28 year mark and i just recently started having the same problem. I have been with my wife 15 years (we dated for 11 and married for 4) and we have found other ways to be emotionally together as well as physically. I too have just stated exercising and watching my health. So let hope that it works and we can get back to living instead of worrying. thank you for sharing.
  • Kelly   Jul 28, 2015 5:54 PM
    Thanks for sharing your story. You two will make it through, comedy always helps. :)
  • foggydave  Jul 29, 2015 11:33 PM
    Good info from everyone, despite the subject, thank you. I've been suffering from a lot of this. Almost to the point my marriage of barely 6 years maybe be over. Only time will tell.
  • Alison   Jul 31, 2015 9:12 AM
    Thank you so much for this blog. It seems to be the elephant in the room that no-one is talking about. I'm much older than you and female but the same applies. I have no idea if I will ever have a relationship again. Certain bits don't seem to work any more! And its not something you can bring up in conversation with friends. Good for you and isn't it great that you have Meg. She sounds wonderful! x
  • Zev   Aug 3, 2015 5:33 AM
    Making mornings the preferred time helps. Our testosterone levels are generally higher then. But I get this - you've described the issues quite well. I assume you've tried different drugs...they can be quite different. This is a vital topic, and one that needs more discussion. Thanks for having the guts to take it on. And good luck!
  • Gary Dixon   Jan 29, 2016 5:34 PM
    I think, no, I know that sex is 90% in your mind.

    I think the difficulty of letting go and relaxing are essential
    In sex, no, making love.

    Love is the key in this situations. Honestly, compassion, unselfishly loving your partner.

    There's a saying, "you repe what you sow."