Urinary Retention-what to do about it...

[dogmum]

Hello group.... I am back again.  Hoping you're all keeping well.  I'm still waiting my diagnosis here in Italy, but meanwhile have some questions on how to deal with urinary retention.  

What I thought was just urgency and incontinence turns out to be retention, too.  My bladder is distended to 330ml (not sure if that's a lot or not) with 240ml retention post urination (they told me this is a lot).  

I saw my local neuro in April for swallowing and breathing problems (for myasthenia gravis) and she is the one to order the test, but wrote me no further neuro appointments unless I develop aspiration pneumonia.  So, my question is... how should I deal with the urinary retention?  

My local MS chapter has been so near and dear and had the PTherapist review my bladder echography and said I should be self-cathing and suggested an immediate hospital stay to do a new MRI and evaluate things again from all aspects since it's been a few years.  So, I guess I'll be looking for a new neuro soon.  

Should I start with new neuro or get started with the urologist first?  Does this sound like MS related stuff to you guys?  Will this possibly be helpful in getting a diagnosis, or it can be or could not be MS related?  

TY in advance! <3  ~Laura

[dogmum]

Oh, and... Should I be drinking more or less water meanwhile? Or go with the standard 8 cups/ day? I see reasons for doing things both ways. :)

[essdipity]

Hi, dogmum!
.
Urinary retention happens often in MS. My own bladder was way distended too, and I still had quite a bit after normal voiding. I think this is called floppy bladder. I had all the tests, and it sounds as if you have too. For me, these were way all over the place, practically nothing normal. The answer, of course, is self-cathing.

Not fun, and it takes practice, but it can be done. I don't have to do it anymore, I'm glad to say. This is because it became normal, after my morning pee, for the residual amount from cathing, caught in a special tray, to be pretty minimal. Your experience may be different, and you may have to cath several times a day.

My advice is to see a urologist for this now, rather than waiting for a neuro, who will tell you to see a urologist :-)  I see a uro-gyno, which makes things simpler, sort of one-stop shopping. Anyway, retention is not a good thing, especially as it really accelerates the chances of UTIs from this bacteria breeding ground.

I still have other bladder issues, including once-in-a-while epic floods, but in general things are good in that department. I wish the same for you.

ess

[dogmum]

Ok, that sounds like something I can do.  It gives me hope to hear that you've been able to stop cathing.  Those epic floods are a nightmare... have had those now and again for the past 15 years and they always manage to happen at the worst possible times.  <3

I see a urologist August 10th, but could see the head of the MS department at a research hospital a few hours away as soon as Monday.  I do think I'm going to take your advice though and see the urologist first and get that out of the way.  Best to you, and I'll be hoping that your TN becomes a thing of the past very soon.  

Laura

[supermum_ms]

Hey Laura

This is the best informative booklet i have on MS urinary dysfunction.... http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Urinary-Dysfunction-and-MS.pdf

It sounds like you could be dealing with a combination of urinary issues, the booklet mentions basically everything relevant, home tips, meds, therapy etc and i've found it well worth you reading.

"Combined dysfunction
Failure to store in combination with failure to empty (formally known as detrusorexternal sphincter dyssynergia) results from a lack of coordination between muscle groups. Instead of working in coordination with one another (with the detrusor contracting to expel urine while the external sphincter relaxes to release it), the detrusor and external sphincter contract simultaneously, trapping the urine in the bladder.

resulting symptoms can include:
- Urgency
- Dribbling
- Hesitancy
- Incontinence" (link above)

To be honest it is pretty common in MS but there are many other causes too, it's possible the retention issue might not specifically be caused by MS, and it's definitely worth finding out. If you've been dealing with urgency and incontinence for awhile, you could even have a UTI going on or even inadvertent created the habit of not full emptying, which is easily done when the bladder is irritated and constantly feeling uncomfortable, making it harder to tell that your bladder is still not empty.

So I also think you should see the urologist for this and if you at least get the causation specifically worked out and it turns out to be neurogenic, you'll have the additional evidence and probably another specialists opinion and referral to a neurologist as back up.

Cheers.........JJ

[dogmum]

Thanks for the brochure link.  I've been dealing with this off and on for 15 years, but am just getting the tests done.  I've had numerous UTI's but don't have one at the moment.

Thanks again :)