This Is MS Multiple Sclerosis Community: Knowledge & Support

I need some help. We all know that there can be specific issues with our bladders. However, I have found out that there are (from what I can find) three discreet conditions that you can have with your bladder from MS.

One is OAB (Over Active Bladder) which, in layman's terms, means you have to pee all the time.

Two is flaccid bladder where your bladder over fills and does not generate sufficient contractions to void.

Third is detrusor sphicter dyssynergy. This is apparently what I have and involves dis-coordination between your bladder contracting to void and the urethral sphincter opening to allow voiding.

What my symptoms have typically presented as is a strong urgency to go. When I go, I have good "pressure" and a good stream for about 3 seconds. I then "pull on myself" and generate another approx. 3 second flow and it stops. I then squeeze my bladder like I'm trying to hold it in, tap on my bladder, and then I can get a third stream. This has typically resulted in a void of approximately 4-5 oz. of urine.

This results in me peeing very frequently in the mornings (I get up anywhere from 2-4 times per night to do this too) until I get cleaned out. Not unmanageable, but a pain in the butt. I have never had a UTI. I drink my cranberry like a madman and I think this has helped.

My new problem is this: I am now able to still get my three streams, but they are now only dribbles. I end up "filling the hose" and squeezing that out about six or seven times and it's barely enough to fill a urine speciment cup. As a result of this, my incontinence has gone way up, but only when sleeping, especially if I nap.

Oxybutinin does not work since that makes me retain. Bladder stimulators do not work since I pee myself, so I think I have one option left, IC. I'm not really scared of this, but don't want to start if it will take away my ability to pee on my own in case some repair happens when I get my Tovaxin. I'm so close to the extension portion of the trial (late Nov.), but don't imagine that would be an area I could expect to regain any lost function since my bladder symtpoms have been with me for six years now.

Does anyone have any insight on how to improve this without limiting fluid intake? I'm already doing that somewhat and my constipation has gotten worse so I can't do that anymore. For as mobile as I am and as much good energy as I have, it sure feels like my bladder is way more advanced in terms of how screwed up it is compared to the rest of my symptoms.

This is new in the last week and has been constant for about that long with no change so I think this is the new status of my bladder since it has remained unchanged for a full week. There is a good article in the new MSF mag. in the Men and MS section about IC'ing and it sounds like it has really helped the guy who wrote the article. I sound like I'm talking myself into doing this, but I would love some feedback from someone who is currently IC'ing. I would like know how often you do it and how much they cost and all that kind of detail.

Any feedback would be greatly appreciated.

Thanks,
Lew (Loobie)

Im sorry Loobie but i just can't imagine sticking something up my dick the same as sticking myself there with a needle to get a hard on. I would rather piss myself once and a while. This thinking is because all of the other problems i have, now my left eye is starting to go, bring it on! This is no help i'm sure but all have left are opinions sorry. My bladder has been f@#$%d up since the beginning. Out of all the drugs i've tried mj helps the most.

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Had ms for over 19 years now.

Loobie;

Do you sleep well - other than for getting up to pee?

You sound very much like I used to be, esp. the getting up during the night. I also was suffering from poor quality of sleep so my neuro sent me for a sleep study. Turns out I also suffer from sleep apnea.

That is treated with a face mask blowing air into your lungs while you sleep. The odd thing was that it not only had a pronounced effect on my quality of sleep - it had a major effect on my bladder.

I was getting up at least twice a night to pee. Now I get up to pee during the night 3 or 4 times a YEAR. Daytime control has also improved. Is there a connection - I don't know. But I do know the body is a weird and complex organism where the strangest of things can have a multitude of effects.

Good luck

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Carpe Diem

Oreo,

I do indeed sleep like a log until I have to pee. I do not snore and until I had MS and neurogenic bladder, I would sleep really well so I don't think I have apnea. My wife has occasional insomnia and she says I don't even move, or snort, or stop breathing and start again or anything so I think I'm safe there. I do appreciate your feedback.

Robs,

I hear you. MJ does help relax my bladder as well. I know the times I have run out, I still crash really easily but am up probably twice as often as when I hit the bowl before bed. My deal about the bladder is solely related to sleep and trying to work a demanding job. I'm like you in that I have come to grips with occasionally pissing myself. The first time it happened, I was really F'ed up for a day or two, but then I looked at the adult diaper aisle at Walgreens and realized I wasn't close to being alone. Also, when you only go about 4 oz. at a time, you don't mess things up that bad anyway. Good luck with the eye thing. My left one is my bad one too. That's the scariest thing to me because if I end up immobile, I still want to read for F&*%s sake! I've never heard of injecting your johnson to get a boner. What's up with that? My fun sexual dysfunction is that I can get it up, but I can't get off! How big of a tease is that? The times I have my wife take me all the way there, I need a week to recover from the friction burns! TMI, I know, but hey, sometimes I have to laugh to keep from crying.

Loobie, same same same to everything you said. Someone here said there was something you could inject into it to get some wood, maybe he was just bull shitting who knows.

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Had ms for over 19 years now.

Hi there Loobie,
Whenever you read a brief description of MS one of the possible symptoms is always listed as "bladder problems", but that innocuous looking phrase conceals a variety of problems which, for me anyway, dominated my life, destroyed my self confidence, affected every decision I made and made me feel more disabled than many of the more obvious signs.
About 3 1/2 years ago I had an indwelling catheter fitted, and it was a huge weight off my mind. It's not exactly pleasant, (in fact I'm due to have it changed tomorrow – that happens once every three months), but it removed an enormous area of worry and at least allows me to feel comfortable all the time. There is an increased risk of infection if you have one, but if you don't there is also a similar risk if you are damp, if you don't void properly, or if you don't drink enough – apparently people with MS are renowned for being dehydrated for this very reason, and if you get really dry your electrolyte balance can be affected and make you feel worse. I now drink at least three litres a day, (mostly whisky). Cranberry juice is excellent for keeping infection at bay, but as I understand it it's not a good idea to start drinking it if you already have an infection because it can mask the symptoms.
Out terminology is different, but I'm guessing that IC stands for "intermittent catheterisation", where you do it yourself as and when needed, such as overnight. I know this has certainly proved to be the answer for some people, and it sounds to me as if it would help you enormously but I can't tell you anything about the costs, or whether you can bring yourself to do it!
Incidentally, there is an injection available to deal with impotence but I can't give you personal experience of that because A) my catheter would be in the way, B) I can't move, and C) nobody's interested.
And anyway, it's only a little prick.

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Dom

You ARE talking about the hypodermic, right?

If not, it's your duty as a man to lie........you know, like the size of the fish that got away!
Bob

Thanks for all the replies. Dom, IC in this case does mean Intermittent Cathetrization. I just got back from the neuro (my next to last Tovaxin visit) and he suggested that as well; after I see a urologist. That little prick thing would absolutely kill the mood for me! I've never heard of such a thing. I have heard of the urethral suppositories, but never a needle. Whoever thought that up must be a masochist!

They got drugs for everything..

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Had ms for over 19 years now.

Loobie it is not as bad as it sounds. you get used to it and just becomes part of your routine. i've been doing it for about 3 + years - 4 or so times per day. it is much better than peeing your pants. follow all the clean procedures. cost is not bad, i get a 3 month supply of catheters and lube for about $30. ldn seems to help. if you empty your bladder before bed w/cath you can sleep the whole night without having to get up to pee.

good luck - Harry N

Thanks Harry,

That helps put my mind at ease. Up to this point that had been a point for shipping only, not receiving, and I have to admit I was having some anxiety. Thanks for your response.

Just want all of you comedians to know that I am sitting here laughing my a** off reading your posts.

Keep it up (ha ha) we need all the humor we can create.

gwa

We aim to pee..... I mean please!

Jeepers creepers! Glad I am not the only one battling to pee out there and considering intermitent catheterization (in my case so I don't get chronic infections which not only would exacerbate the ms, but could lead to a recurrance of my bladder carcinoma which was "cured" 10 yrs ago - in remission from something - yeehaa) - but the guy stuff is a bit beyond my personal experience. However, as an RN, I can vouch for the existence of the needle, and the fact that it apparently works - the Uros can help if anyone needs it! There are also lots of other things that can help in that department - talk to the Uros...

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Al

At least for now, the little blue pill cut in fourths works for me since I only need it to keep it going for the marathon it takes for me to, how shall I say, achieve fulfillment ! Since I am ate up with researching stuff now I also searched and found out about the injection and the suppository. Like Robbie said, you'd have to want some sex pretty damn bad to stick a needle in the bishop!