Sexual dysfunction, anorgasmia, and missing the boat entirely

You have got to love a disease that gradually takes away all your fun. It's a darn good thing we MSers have a sense of humour, or we'd give up in despair.

So you've lost the pleasure of a long hike in the mountains, or the joy of marshmallowing in hot tubs. You can't even sit long without cramping and you love a good drink but hate the subsequent smell of pee as your bladder misbehaves.

Coffee may be your best friend when at home, and your enemy when out, unless you locate yourself next to a bathroom. Your vision - well, we won't go there as I am terminally depressed about mine.

I used to joke about my fatigue and dating - that I'd go out on a date and be overwhelmed with making conversation, so I'd bring the fellow home, and then I'd be so tired I had to lie down. Somehow the guys ALWAYS got the wrong impression...

But now even that sinful pleasure has left the building. Sex can be exhausting, and overwhelming to sensations. One of my more perceptive dates (god love his furry little hide) noticed that I was in pain after sex if I didn't orgasm. (Note: no one else has ever seemed to notice or care - and of course I am battling exhaustion so don't demand as I should)

But that isn't often easy for we MSers, either. Not only are our sensations all over the place, missing, or twisted, but we don't get to the end point as often as we'd like. I liken it to lighting a firecracker and then having it just burn down, with no explosion. The firecracker is burned out, but still full of unexpended gunpowder, and sparks that fire in places they shouldn't.

Tuppy Owens, founder of the Outsiders Club in the UK, is a proponent of sexual workers being able to help those of us with handicaps in this area. These sex workers are not prostitutes but essentially perform a similar service, spending time in a sexual way with disabled people. Unfortunately, this service is not available in Canada - it's still illegal to purchase these kinds of services, no matter the medical need. I suspect this is because we are still under the conservative thinking that sex is not necessary for survival or health. And/or that disabled people wanting sex is just creepy. I think that is wrong-headed, discriminatory, and hurtful.

I know people who have lost "normal" sensations for whom touching an ear can be thrilling. Other more intimate touches may 'work' after the body is turned on with focus elsewhere.

But what about those who are immobilized, who can't share physical sensations with their partners, who don't know how to please each other in a changed situation?

So that's why I'm working on my book. It's not that I live for sex or are terribly focused on it - it's that I know what it's like to lose a bit of it, and I know how it affects me. So few people with disabilities get touched in any other than a helper way. It's wrong. Touch is important to everyone, disabled or not...and sexual or not.

So I toil away, with my  unhelpful MS brain dragging behind my wishes to get it complete.

In the meantime, I've found a site for people with spinal cord injuries (which we often are - I find it helpful to think of MS as acquired brain damage and spinal cord injury) that provides information about many aspects of intimacy with this condition. Please visit and tell me what you think. Is it enough to be told these things, or do you wish for access to sexual surrogates (not me, I hasten to add) here in Canada? And why is it that all of these sites focus almost exclusively on male erection and ejaculation and so little on women, other than mentioning lubrication? Sheesh. Apparently we are again simple receptacles.

Here it is, from Vancouver, of course, from their spinal cord program: http://scisexualhealth.ca/sexuality-201-sci/

They also have a lovely booklet that talks about devices that can be used for different abilities. Once again, there is a greater focus on aids to men, but the information is adaptable:
Pleasurable: Sexual Device Manual for People with Disabilities
What I like about this one is that it breaks down toys by where you need help (hand strength, positioning, etc) and includes a section on devices that can be applied by caregivers and left in place while you have some privacy...

 'There's nothing you can't do if you set your mind to it. Nothing is impossible." Rick Hansen


Have a look, have fun, and let me know what you think!

Oh Goodie!

Less than a week to my bilateral total knee replacement and I'm reviewing the inter webs about information...
And I see this one...apparently my sex life will get better post-op. Hmm. Now I just need a partner...;-)

http://tarlowknee.com/category/total-knee-replacement/page/4/

Dr. Tarlow comments:  Common knowledge says successful joint replacement surgery improves life function and patient well being.  Less often addressed but of importance to patients is the effect joint replacement has on sexual intimacy.  Fortunately, good news is seen in this aspect of patient life after orthopedic surgical intervention.  Read on.

From the Daily Mail -U.K.

From  a report from  Rathod P, Deshmukh A, Ranawat A, Rodriguez J presented  at the 2013 Annual Meeting of the American Academy of Orthopaedic Surgeons (AAOS).

 Painful osteoarthritis of the hip or knee can reduce mobility and make normal activities like walking, exercising and yes, even sexual intimacy, a challenge.  New research evaluating the influence of total hip and total knee replacement on the physical and psychological aspects of sexuality found a majority of patients experienced reduced function before surgery. Fortunately, significant improvements were reported after total hip or total knee replacement surgery. 

Before surgery, 147 patients answered questionnaires for the study. Of them, 67% reported physical problems with sexual activity such as pain and stiffness, and a whopping 91% reported experiencing psychological issues, related to sexual self-image and general well- being.

Post-surgery, 116 participants responded to questionnaires and reported significant improvements in both physical and psychological issues impacting their sexual function. Ninety percent (90%) of patients reported improved overall sexual function after total hip or total knee replacement, with total hip replacement patients experiencing a higher rate of improvement.

The post-operative improvements reported were:

• Improvement in general well-being: 84%
• improved sexual self-image: 55%
• improvement in libido: 42%
• increased intercourse frequency: 41%
• increased intercourse duration: 36%

People considering total knee or total hip replacement surgery should talk to their surgeons about their current level of activity, and what they can expect for their post-surgery return to activity – in and out of the bedroom.

Arggh and Bloody Hell and sex and MS

Okay. A few months ago I pitched a book about MS and intimacy and there was publishers interest in it - and then my co-author dropped out of the project and I was fed up and decided to not write it, for the moment anyway.

And then I saw this today and I am mad again. Once again, the "recommendations" are merely a list of things that go wrong in MS, and the recommendation to "Talk to your loved one".

OF COURSE it is important to talk to your partner (if you have one, which I don't and let me say that dating with MS is another whole ball of wax), but just talking about it won't help the problem. My experience in talking with neurologists and others about this is that they toss blue pills and stuff at men (lest their threatened penises get all worried) but provide nothing in the way of help for women other than a bottle of lube, which, face it, is more about the man than the woman.

Geez.
It's so frustrating! Lately I've gone all completely numb again and I am cheerfully considering a cat as a life partner cos I have no reason to think about anything else, and yet I know there is no one in my health care circle who can help me.

So I'm off to find another co-author and research this myself and then share what I find out. Cos if you're out there with MS and want a little physical affection, you are alone at the moment.

from the inimitable Despair.com

Here's the OH SO HELPFUL article.

Neurologic Impact of Multiple Sclerosis on Sex

Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along the nerve pathway in the spinal cord. MS-related changes to these nerve pathways can directly or indirectly impair sexual functioning. For example, the following symptoms can occur as a direct result of myelin breakdown in the spinal cord or brain:

• Decreased sex drive
• Altered genital sensations (numbness, pain, increased sensitivity)
• Difficulty or inability to maintain erection
• Decreased vaginal lubrication
• Decreased vaginal muscle tone
• Ejaculation difficulty
• Problems having an orgasm

The following symptoms can arise as a consequence of MS physical changes or treatments:

• Fatigue can suppress sexual desire
• Spasticity can interfere with sexual positioning or cause pain
• Sensory changes can make physical contact uncomfortable.
• Pain

Psychological Impact of Multiple Sclerosis on Sex

A loss of interest in sexual contact or intimacy may arise as a result of psychological or social issues associated with multiple sclerosis, such as:

• Depression
• Performance anxiety
• Changes in self-image or body image as a result of disability

What Can Be Done to Improve Sex With Multiple Sclerosis?

Talk to your partner about your sexual issues and multiple sclerosis. The most important way of dealing with sexual difficulties is to discuss your feelings with your loved one. When MS begins affecting your sexual desire, talk to your partner. Confiding in your partner deepens intimacy and may help resolve concerns relating to sexual intimacy.

Need your input for MS and Intimacy book!

 While ago I posted a link to the Survey Monkey survey I'd put together for the book I'm writing with Karen Kalinowski about MS and Intimacy.

In case you don't know, I'm a former registered nurse, epidemiologist and freelance writer, living with MS. Karen is a Sex and Kink educator who has worked extensively with people living with disabilities.

A good many answered, but more input is needed. Some of the comments said that there didn't seem to be much focus on partners' opinions, so I've created a secondary survey for partners.

Both surveys are COMPLETELY ANONYMOUS. There is no was I could ever link your response to you, your location, anything about you. The online survey people can't do that either.

It does allow me to compile responses and gather information that will guide the book's creation. Won't you please help me put together a resource that will help you and your partner as you live with MS?

The surveys are below.
Only ten quick questions each...

Persons with MS: http://www.surveymonkey.com/s/LSLN9XN

Partners of persons with MS: http://www.surveymonkey.com/s/NCTJSLM

does being numb make my soul numb?

Being numb now for over a year, I often wonder what other effects it has on me. I'm not totally numb - as I've noted, sometimes I have pieces of sensation. The numbness is becoming more profound, though - affecting my balance, my ability to write and type and chop bagels without injury, blocking inner sensations from bladder and bowel and other more interesting places. (Dang it!)
Neurologists invariably say they are less concerned with numbness as a symptom than the other things like muscle weakness and such. It's not supposed to be so serious. And yet, it changes our lives.
 For those of us so enclosed, it's pretty disabling. It disconnects me from the world, makes it seem like I'm watching outside me through a pane of glass - and with my blurring vision, that isn't so great. And it has this other effect, too, of making me feel distant from people, from the world, like I'm shut in a padded room where even the room temperature doesn't make me feel.
Philosophically, it makes it difficult to care. Because I feel distant, I have to constantly make an effort to reach out through the fluff to touch others. It's easier to remain inside, where I don't have to make the effort.
  Maybe the exterior numbness is contributing to depression. I know I've battled depression for years now, and wading around there in the darkness does make things seem muted, edges less sharp, needs less urgent. I find as I get more depressed or more numb, I go for exotic tastes, different experiences, more carbs.
I probably just need to exercise more, to thrash my wooly body through space so that I can get a feeling for where my limbs are. Usually that helps The deep breathing helps, too. The exercise makes me more numb, but somehow makes that all right after all.
But oh, it would be nice to feel certain things again: the fur of my puppy, the touch of my friend's hand, the roughness of sand, the smoothness of rocks, the barrel of a pen when I pick it up to write.
And let's not spend too much time on this, but it would be smashingly lovely to feel making love again. Or a bit more, anyway. 
Maybe I need those steroids. Might help my sex drive, too. Of course, would grow more hair to be fried off by my friendly local electrologist, but it could be worth it...I hear ZZTop are still doing pretty well at their advanced ages...


Here are a couple of things from the National MS Society (which as usual, is the name of the US branch - why they think the rest of the world isn't a nation, I dunno) on numbness. Reality is, if you've got it, you're screwed. Not that you'll notice...


There are no medications to relieve numbness. Fortunately, however, most instances of numbness are not disabling, and tend to remit on their own. In very severe cases, a neurologist may prescribe a brief course of corticosteroids, which often can temporarily restore sensation. National MS Society


http://youtu.be/jjcD7a3SB9o