Last reply 8 years ago
Sex. and disability

For something titled “sex, drugs and rock and roll”…..everyone is very coy about the SEX word. So I’m biting the bullet and starting this one.
Who was at MS Life 2012 and went to the Sex and disabilty seminar?
I will fess up!

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ophelia
8 years ago

I’ll go first! Damned MS stopped me being able to orgasm….very disconcerting considering this has never ever been a problem in the past. This is all started before diagnosis and my poor boyfriend took it very personally which made me feel worse. However….since a course of steroids I ‘think’ I’ve got my mojo back!!! Any other girlies reading this with the same problem….Ann summers aqua rabbit has been my saviour!!! I’m in a long distance relationship and haven’t seen my boyfriend since my treatment so haven’t been able to test ‘that way’ yet!!!
Oh, I’m not shy about these things which you’ve probably guessed!!!
Ophelia.x


Anonymous
8 years ago

I have the same problem Ophelia. It was a HUGE shadow in the room with me and my partner for a while. He knows more then anyone how my symptoms effect different parts of my life…but that was one we just hadn’t talked about…my lowered libido and ability to orgasm…or even feel things the way I used to be able to. Even toys don’t work as well. I’ve had the hardest time coming to terms with it…it was never ever a problem before and for quite a while it got me waaaay down. But my partner is being very supportive and working with me…and I’m hoping for the best in this matter.

Really happy to hear that you think steroids have helped! thats awesome =)


aardvark
8 years ago

Hey redvine, why am I not surprised it’s you who started this topic? 🙂

OK, I’ll get in here from a man’s perspective. I think my MS might have completely shafted (unfortunate term) my libido. I used to have an insatiable sex-drive – but over the last few years, my long-suffering wife has had to learn to improvise.

It’s probably the most depressing aspect of my ailment so far (but then again depression can be a self-fulfilling prophecy). Fortunately for me, I think my wife is in it for the long run.

THEN AGAIN, I’m wary of blaming everything onto MS. I used to self medicate with that old-school MS remedy (to hell with 10000 IU of Vitamin D, I was into 100000000 IU of Vitamin H – that’s Hydroponically grown space-weed, smoked mainly in the conservatory so as to not piss off Mrs aardvark). I think that dropping that from my life may have had an effect. But that was some years ago. Hell, I’ve been off nicotine for 2 years on May 19th and the weed went long before that…

In other words, there are so many things that could be affecting this for me. But then I’m a man. And we’re quite simple when it comes to this department. On/Off. And little in-between…


reddivine
8 years ago

glad to have started the ball rolling. For the more reticent of us, and some folks don’t like discussing this stuff, may I bring attention to some organisations that exist to help.

SHADA – (Sexual health & disability alliance) for health professionals interested in providing better sexual opportunities for disabled people.
The V-group: discussion group for disabled women with intimate problems.
Outsiders, a charity which is a network of ppl with physical,sensory & social disabilities. (We got a mention in the seminar at MS LIFE!) Runs a Sex and disability helpline
11 am to 7 pm on 0707 499 3527


reddivine
8 years ago

@aardvark….well they do say that weed has that effect, y’know. Maybe her indoors had a point.
Few suggestions on the “orgasm” problem.
COMMUNICATE with your partner. Say this position isn’t working for me or whatever.
IMAGINATION…is also a sexual organ. Use it. Try something new. New positions, new lingerie, whatever gets you in the mood!
OPEN YOUR MIND……theres more than one way to please a woman/man! If penetrative sex is not cutting the mustard, well try oral, anal, little rabbits…..the internet is your friend in this dept.!
PATIENCE – MS might not affect your libido, but weak legs, twitchy legs, bad back etc may mean trying new positions and experimenting….


gav
8 years ago

My mood does sometime give my ‘urges’ a bit of a kicking, please to say though that the ‘little’ man still work 😉 A vibrant imagination helps too, utter filth.


aardvark
8 years ago

@reddivine

Interestingly (without wanting to hijack the topic), I’ve been wondering for quite a long time as to the general impact on my MS symptoms from the weed that used to be a constant part of my life.

Many of the (mild) symptoms that I’m now encountering on a near-daily basis – fatigue, lack of motivation and poor co-ordination, would have been completely masked by my habit. It never occurred to me that it might have been caused by something else – and of course it might not have been.

As for my sex drive – that seemed to be switched off at about the same time that I stopped smoking the weed. MS? Maybe. Ironic though, as I finally smelt nice…


reddivine
8 years ago

Well Gav, good to hear you standing up (or is that lying down?) for UTTER FILTH!!!!!
Always remember peeps, we have 5 senses……..taste, touch, smell, hearing & sight……use all of em and learn some new skills. How about foodplay? massage, with scented oils?
Foreplay, esp for a woman is very important……sloooow but find out what excites her or him!


gav
8 years ago

Guilty as charged 😉

All working here…….positionally i’m certainly not as subtle as i used to be!!
Fatigue can be an issue too…..after 10 seconds i’m done in…. cut my time down by two thirds!!!


tracy
8 years ago

my mojo has disappered! i was hoping a few beers would help but sadly it just made me tired. haven’t told my BF yet, just going along with it.


danrb80
8 years ago

Well thank fully this has not greeted my doorstep yet or my ‘little man’ but it is one of the symptoms I worry about the most. Lets face it we all like a bit of it and I love it so if I couldn’t have it I will have to take up knitting I suppose or something else to occupy my mind and hands.


tracy
8 years ago

to be totally honest, i have so many issues with MS and my life that it doesn’t matter right now. i’m sure when my life gets slower i might want to have sex again! i know it sounds very sad.


paul2011
8 years ago

i can’t feel a thing and gave up years ago. It really is a dismal illness MS. :-((


reddivine
8 years ago

@ Gav

On the subject of FILTH……as u are self confessed lover of same!
I heartily recomend this place in Brighton………www.hotelpelirocco.co.uk
I read it reviewed in the guardian travel section under “naughty weekends” and when i saw the website, thought we MUST go there!
They do FABULOUS cocktails, with names like “fur-coat-and-no-knickers”, “dirty rotten scoundrels”.
We went in March, in fact the profile pic is me in “Bettys Boudoir”! worth every penny!


scotkiwi
8 years ago

I must admit that this is the bit that sucks the most.
Not even a twinge unfortunately.
Probably is part of why I don’t allow myself to get close to anyone these days.
To finish on a positive note tho, it’s sunny and I have finished work – hurrah!


christeeny
8 years ago

So, I’m the opposite.
I went deaf, can’t walk very much and yet my sex drive is higher than ever. And it was always high.
I don’t know if it’s the prospect that I could lose it, but I have more sex now than I ever ever ever have before (I’m talking like, 4-5 times a day. I don’t work, what else is there to do?). My partner is quite happy with this.
Also – easier and more intense orgasms than ever before in my life.
I do smoke a lot of weed though, and it makes me feel all sorts of awesome.
It’s funny – when my legs are completely done and I can’t walk – a few orgasms and I’m a bit more mobile. Why is that?


captainkristoff
8 years ago

My sex drive has gone right up too. I’m not working at the minute as my colour vision issues have ended my design career so I’m sorting out what to do with my life for work. This leaves me with a lot of spare time though…
Since starting on Tysabri and finishing my stressfull as hell job my symtoms have pretty much all gone, and even my balance has fully returned, so I’m out on my bike for 15 odd miles a time as the sun shines and up the gym lifting weights 4 times a week, fuelled in the large part by pent up sexual frustration I think! With my girlfriend living 100 miles away at the minute though and so only getting “lie down tickles/grown-up cuddles” once a week means my internet history is like that of a 15 year old boy!
Still, worse things can happen…..


susanf
8 years ago

WOW – with MS you know you are not alone, but you feel it sometimes! Whilst its not good news to hear other people having orgasm problems the ‘phew its not just me’ feeling helped. I have a wonderful boyfriend of 14 years (who has never known me without MS) but the last 2 years our active sex life has nearly vanished. Cant really feel anything much let alone orgasm, I have even given up trying myself! Nightmare!!!!!!!!!!!! OK first posting done, wasn’t expecting that revelation.


jman
8 years ago

As reddivine has posted before there are other ways to enjoy sex. I did a presentation at the Royal Society of Medicine a few years back see: http://www.rsm.ac.uk/academ/sej101.php
And one of the topics, sorry, demonstrations was tantric head massage. The recipient was a gent paralyesd from the neck down, but could achieve states of near sexual bliss from the massage. So Don’t give up on yourself, or your boyfriend.

Besides, sex is good for you. Its a scientific fact:
http://www.webmd.com/sex-relationships/features/10-surprising-health-benefits-of-sex?page=2

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