Hi, I don’t post ‘that often’ but I am looking for any advice. I am 55 and know about sex. I only ‘got’ MS after I was married and have had MS for 12+ years. Unfortunately, I have recently had problems with my urinating (which meant I couldn’t control it) and I was ‘fitted with a catheter’ I have had it for about 7 weeks now but have been ‘unable’ to have sex. I was given advice to use a condom and ‘tuck’ the catheter into the condom. I made a try ‘once’ but I 'couldn’t even get the condom ‘over the catheter’. My wife was unable to assist and I’m a bit embarrassed to ask a nurse to ‘display’ what has to be done (in fact I’d rather NOT go down that route!) - unfortunately, I will if I have to but I thought about asking about it first on this discussion board? The catheter is not due to be replaced until January 2012. I don’t want to wait that long - I’ve taken all of the 12+ years to get used to the bloody MS. It has ruined my life - I used to do long distance running and martial arts and I used to keep fit but now I can only ‘shuffle’ with a ‘zimmer’ due to this ‘relapsing/remitting’ MS. My story is not the only one, I know but I’m damned if it’s going to take away my sex life (hopefully it isn’t but I know that ultimately I don’t have any say in the matter?). Anyone got any advice, please? Sex used to one of the few bits of exercise that I got!
Thanks,
Marcus.
(I’m going to hate myself and feel ashamed for this but I ‘have’ tried masturbating (god, I feel like a teenager) but it did not work! - have you tried doing it with a catheter restricting your movements) - it was hard enough (at times) coping with being a human being but this MS (as you probably already know makes things worse!) and now I’ve lost sex - I wonder, is ‘knitting’ difficult and does it take your mind off things?
What an awful situation, don’t know anything bout your problem but can only imagine how demoralising it must be, am sure there must be a way round it, have you asked the ms or continence nurse? I would like to think or even hope for myself that there is someone who can help/guide us through these hopefully!! temporary problems. Good luck and am sure you and your wife will get through this , prob be advising others before long!
Sure you will have considered this anyway, but just in case, would botox have been an option with intermittent, rather than indwelling catheterisation?
Is a shorter cath an option so not so much to fold under condom?
Is suprapubic cath an option?
Marcus,
This is a terrible situation for you - My husband had to be catheterised because of prostate problems - he could not pass urine.
After about 4months of it he did have an ‘op’. and things have eventually got better for him. But the discomfort all the time of the catheter
was ‘hell’ for him. Before you had this done did you try any of the ‘meds’ for controlling your bladder? l have a supra-pubic catheter which
of course does not get in the way of sex. l did google ‘supra-pubic catheter’ recently, and there is a forum of folk discussing the pro’s and con’s
of it. lt was very interesting as they were not all pwms - some were people with spinal-injuries. Wished l had ‘looked’ them up before - because
you learn far more from folk in the same position then any of the so-called experts.
Botox injections do work - but you will have to self-catheterise 4/5 times a day. Another option, is the latest treatment for incontinence,
that ‘Neuronerd’ mentioned last week, Sacral Nerve Stimulator - l googled that and found it very interesting. lts about time that a new treatment
was available. This treatment is helpful for bladder and bowel problems. Look up the options - print them off to show your GP.
And l sincerely hope that you find a better way of controlling this problem.
l did wonder if the botox injections which paralyse the muscles will effect your ability to have sex.
Be worth asking other men who have had it done.
Can you just use tape rather than a condom to keep the tube folded Or how about a ‘cock ring’ (google it).
How quaint, I’ve been censored, in case you couldnt guess, the filtered work also doubles up for the shortened name for a male chicken. Theey’ll be covering up the piano legs next!
Sorry about the typos, I’ve just quaffed a very nice bottle of wine.
Thanks for ALL your responses! You’ll see today’s date (and the date when I ‘first’ made the comment - how ‘slow’ is that? I hadn’t ‘READ’ the replies until today!!) THE WHOLE ‘DAMN’ THING HAS TAKEN ‘THE BEST PART OF FOUR MONTH’S TO ‘REPLY TO’ (AND I STILL HAVE NOT HAD ANY SEX!) - (Now I know how ‘MONKS’ maybe feel?’). To be ‘FAIR’ - it is not as bad as it sounds? - Thing is, I haven’t found ‘ANYTHING’ to replace it. THE ‘SUN’ IS OUT TODAY AND I’M FEELING A BIT MORE ‘POSITIVE’ - I’M LISTENING TO ‘MUSIC’ AGAIN! - WHAT WAS THE ‘OLD BEATLE’S SONG?’ - ‘ALL YOU NEED IS LOVE’ (if I’ve got it correct?)
Marcus. x.
Having been a urology nurse before I had to give up due to health, I’m an ‘expert’ in this. Try using larger condom to get the catheter into and out of the way. You could try this alone or as part of the ‘build’ up with your wife. Buy a few different makes and sizes.
I’m sure you can buy them on the internet or in a self check out at the supermarket.
Honestly a nurse would not have an issue with discussing this with you.
Thanks for your ‘advice’ (and good luck with your heath). Background : I have ‘gone out’ with girls who are ‘nurses’ and my sister (whom I’m not speaking to) is a manager (admin) at Ninewells Hospital in Dundee. My wife is an ‘ardent’ catholic (but I’m not) so I do have to be ‘careful’ when I ask her to go to the supermarket (again) - We’ve not used the first lot (they didn’t work). I ‘think’ that I know where ‘you are coming from’ - in my past I have gone to Abertay University and met many ‘student nurses’. I bet you wish that you hadn’t bothered ‘with this one!’ BUT THANKS for your ‘expert’ advice - on another issue, do you think that we’ll ever see an end to this 'horrible condition, please? I’m 55 now and have suffered it for 12+ years (and have an 8 turning 40 year old daughter - as they do!)
Best wishes,
Marcus. x.
I ‘forgot’ to add that if you ever needed any ‘free’ (woops, she might kill me) Optical advise - my wife is an ‘Optometrist’ and apart from being Catholic, she is from ‘Northern Ireland’ - I’m from Scotland. But she does ‘look after me (when I’m good)’. I sometimes wonder if MS is that bad?
Best,
Marcus. x.
(I’ve had to go back to see what I was ‘talking about’. I do have memory problems but I tell people that apparently so did Einstein (I think?) - I didn’t sleep well last night (my excuse!)
Hi. Can’t help with the sex thing. Supra pubic sounds like the way to go. I don’t know where my sex drive has gone. Pain sleep and general fatigue don’t help. I’ve just spent 3 wks in ward 23a in Ninewells I usually ISC but my back went into spasm so I had a flip flow Cath fitted. No idea how sex works with an in dwelling Cath. I guess I move it to one side. Bit of a turn off tho. Hubby is very patient bless him. But I miss our sex life. MS=Mine Sucks Tc Heather
Marcus,
l have had a supra-pubic cath for about 18yrs - lt certainly does not ‘get in the way’ of a sexual relationship.
Recently, l googled supra-pubic cath and came upon a site called Streetsie. lt is run by a disabled chap and has lots of people asking and giving advice about catheters. Some of them are pwms. lts the sort of website that you could ask - quite
easily - personal questions. l learnt a lot from what l read - even after all this time.
Hi Heather,
Many thanks for your email. I grew up about 2 miles from Ninewells Hospital and I’m going to see the MS nurse later this month. (I’m maybe fooling myself that ‘sex’ would somehow make the ‘MS’ better but these days are ‘possibly’ gone now). OK. I was aware that my ‘sex life’ would not last forever but I selfishly feel that at 55, I had a few more years left? Funnily, I don’t grieve for it (all the time). I do have MS (and a caring wife - could be a lot worse!) Your email has been very kind, my own initials are MS (ha, ha!) but ‘sex’ is the least of my ‘worries’ (if I could get a cure?).
Thanks Heather (and pass good wishes to your ‘Hubby’)
Marcus.
Hi ‘Campion’,
Thanks for your email - it was very interesting (and informative) - I’m going to try and ‘access the website either this evening or tomorrow’ - thanks. And also I was ‘impressed’ at how long you have managed to ‘deal’ with it - I was terrified when I was first diagnosed - I didn’t really know what MS was? I became ‘curious’ and went to http://www.streetsie.com/
I haven’t read it yet but on first ‘glance’ it looks ‘quite the business’ - and I don’t ‘feel’ so ‘embarassed now’ - THANKS FOR THAT! - I’m in your debt (I’ve just come off anti-depressives so it will be a real treat for ‘Spring’). Hopefully speak again ‘Campion’ (But only if you want to)
Marcus.
Marcus,
Always pleased to hear from you - l think you are very brave - lts not easy for a ‘man’ to ask for help - us ladies are not so easily embarrassed - especially if we have had children. lt sounds as if your anti-depressives have worked - for a natural anti-d l have found St Johns Wort works a treat. Apparantly, prescribed in Germany as a safer alternative to Prozac- [l have a german neighbour]
Looking forward to hearing you say that ‘Spring has Sprung’.
love to you and your family
Frances.
Thanks Frances,
I’m sorry about the delay but I’ve just read your message today - I’m getting used to ‘missing’ things (you wouldn’t believe that I had been to University). I’m beginning to get ‘used’ to it and thankfully, it is not sore! Thanks for your advice and best wishes and good tidings to you as well. The weather is starting to get slightly ‘milder’ although, I don’t operate ‘too well’ in the heat - ho, hum! - I’m beginning to sound lke an old man - maybe I am? - Your neighbour sounds handy but I never see mine because he always seems to be working - he’s a police sergeant but he also has a brother with MS. I have just heard the weather and it is supposed to be ‘brighter’ this w/e - Spring may be on the way, Yahoo!
Speak later,
Marcus. x
Sorry to ‘keep’ bringing this subject up but I have not ‘found’ a solution yet - I go to see the Neuro next week and I’ll ask him. 'God, I feel a bit like ‘a school kid’ although I am 55.
Marcus.