MS and Sex

Before last week’s dinner, I sat down with nine guys from the Mandell Center for Multiple Sclerosis in Hartford. Mandell deals with urological issues related to MS. This is the only program of its kind in the country. These guys were a support group. Imagine that. Whoever heard of a male support group talking about sex?
What was so interesting was although there are various urological issues associated with multiple sclerosis, there are specific sexual problems that go hand in hand with deeply troubling urological issues. Ninety percent of men with MS will experience a urological issue, many of them sexual.
We sat in a circle and talked openly, without hesitation or embarrassment. Have you ever talked openly about the need to wear diapers because of incontinence? Dr. Marlene Murphy-Setzko is a urologist specializing in MS. She put the group together and says continence and sexual function define quality of life for her patients. They say self-esteem is a big problem.

“I took seventeen patients to a restaurant, many going for the first time. They had never been out because of their embarrassment at incontinence” she said. “There is a lot we can do for these people.” Marlene told me phobia of catheters is common and keeps men away from doctors. “Men would rather use crutches scooters or canes than have a catheter put in.” Dr. Murphy-Setzko went on to say that incontinence put patients in institutions. Hard to believe in 2014. The more things change, the less they change.
But get these guys together and they want to talk about their sex lives and sexual dysfunction. They do it with ease. Many women are treated, and men are encouraged to bring partners and spouses. “They need to understand the problems,” according to Marlene, “ and know it is not their fault.” The it can be decreased libido, trouble maintaining erections and achieving orgasm.
Sexual impulses are transmitted through the spinal cord. Lesions will block those signals, too. Medications can help some of these problems. Of course, here is the famous little blue pill. Decreased libido and a numbed genital area probably are out of reach. It is too bad so many of us remain locked in the closet on issues of sex. Patients can be helped, but they have to step out in the light.
These problems in men are too little recognized and underserved.

17 Responses to MS and Sex

  1. darren weidlich July 27, 2014 at 6:31 pm #

    Mr Cohen,
    It was an honor to meet you. (I was the one pushing the walker that sat next to you.) Your willingness to meet with us was unbelievable to most of us. You inspire many of us, myself included, to keep our heads up and to look at our glass as half full while many around us are pointing out that its half empty. Hopefully our paths will cross again but until then know that you help more people than you could ever imagine.
    Darren

    • Richard M. Cohen July 27, 2014 at 7:40 pm #

      I am honored to do so.

      Best,
      R.

  2. Jeff July 27, 2014 at 8:07 pm #

    Being open about it is key. When I first started having E.D. issues at the ripe age of 32, I had no idea my MS was a factor. It took years of some bad experiences, unhealthy “discussions” with my wife – including blaming her at one time, and repressed feelings to finally come to grips with it. Now, I am finally comfortable discussing openly with my counselors, therapists, and doctors and things are much better. Still far from perfect, but at least my wife and I now have an understanding of why it happens and can deal with it.

    I still get some anxiety over sexual performance, and that little pill helps a bit, but the right state of mind – for both me and my wife – is as important as anything. We try not to have grand expectations. Just spending intimate time together is our primary goal.

    • Richard M. Cohen July 28, 2014 at 7:36 am #

      Jwff-

      Smart man.

      R.

  3. Mark July 27, 2014 at 9:22 pm #

    It seems there really isn’t much which MS does not effect. To paraphrase Dr. MLK… the end begins when we become silent about things that matter. This matters. Thank you for writing about a sensitive topic.

    • Richard M. Cohen July 28, 2014 at 7:38 am #

      I hope peo ple p ull back the curtains.

      R.

  4. Linda Lazarus July 28, 2014 at 7:34 am #

    Thanks. I will pass this on to men in my support group. I am lucky to have met other MS women who are more than willing to discuss…and to strategize!

    Linda

    • Richard M. Cohen July 28, 2014 at 7:39 am #

      Great.

  5. Kathy July 28, 2014 at 2:20 pm #

    Sorry to change the subject from such an important subject but I was wondering if you were noticing any positive results from your stem cell infusion. I have extremely agressive PPMS.

    • Richard M. Cohen July 28, 2014 at 8:25 pm #

      Nt yet.

  6. Jay Contrastano July 28, 2014 at 3:55 pm #

    Hi Richard, thank you so much again for meeting with all of us. It was great to hear your perspective on dealing with issues related to urology. I approached Marlene a few years back and told her how difficult it is to talk to others about dealing with MS at a young age and the problems that accompany MS. I would have never thought that starting the support group with Marlene would have blossomed into a little family who are not afraid to speak openly about such matters. Listening to you speak was very inspiring and I feel like you have joined our little family. Thank you again for taking the time to sit down and speak candidly about these issues. It would be great to sit down with you again. Best wishes
    Jay

    • Richard M. Cohen July 28, 2014 at 8:27 pm #

      We are in this together.

  7. Laura K July 29, 2014 at 8:44 am #

    Funny as I read your post on Huffington, I was nodding my heasd in agreement that this is a part of life rarely discussed in MS treatments and probably less with you men than us women because we talk amongst ourselves. For us women performance can be just that at times – just a performance – men have much greater complexity in their roles and can’t just show up.

    How many times do you fill out that MS QOL forms at the doctor’s office that asks about changes:

    change in sleep -check
    we discuss that

    change in balance, energy, stamina – check, check and check
    we talk about all of those

    frequency, hesitancy, urgency, constipation, incontinence – well yes!
    we hit that list as well

    change in sexual function – check
    that always gets skipped over for discussion. I wonder why the hell it is even on the MS QOL. I’ve been checking yes since 2008 ….. maybe if I were in my 30’s and not pushing 60 it would be considered more relevant?

    I’m happy to read this group has a place to discuss this rarely touched on topic.

  8. Henriette July 29, 2014 at 3:51 pm #

    A few years ago when I told my sister I was going to see a neuro-urologist she said, “Ask him what he was thinking when he got into that line of work, would ya?”

    He said it just plain fascinated him. And I’m glad it did because the one thing I learned from that dude was that my brain and my bladder often misfire when trying to connect up to each other. I guess I knew that– but being tested on a fancy machine and seeing the results show that I have to go when my bladder is 20% full and I don’t have to go when my bladder is 95% full, helped me a lot in working with my own system. oh well, what does that have to do with your great blog on sex today? probably not much but… oh yea, it boosts my MS self-esteem to know that information about my system. As for the sex stuff, thanks for talking about it… I know it’s tough for you guys but it’s no picnic for us either and I think the more it is discussed, the better off we ALL are… as usual, thanks for this blog. I frickin’ love it.

  9. Craig July 29, 2014 at 7:33 pm #

    Once again Richard hits a winner! This is a subject that so many of we MS folks try to ignore or hide in a mental closet, but it is going to require thought and consideration and some courage. Men are loathe to discuss issues of the groin and libido, and so we often suffer in silence. Then along comes Richard Cohen and throws back the curtains and brings it to the discussion!

    Words are powerful things and when they form thoughts that are not expressed, things get worse. The good thing is that when we “give words wings” and set them free, they often lose power and their sense of fear and shame. Set them free and let them fly away.

    Thanks Richard for another great blog.

    Craig.

  10. Dave W August 1, 2014 at 1:43 pm #

    I know u mention the little blue pill but don’t rule out the little YELLOW pill that is 5 or 10mg daily and helps tremendously with both BPH (control issues) and sexual dysfunction issues as well!. It’s name begins with a C if u have not figured it out yet. It also causes me less headaches and other sides than the Blue pill. No I’m not a paid / endorsed spokesperson either!

  11. Hashmi Dawakhana August 31, 2014 at 5:58 am #

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