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Fluid retention & Self catheterisation Advice Please

Hi l was wondering if anyone could give me some advice on the above. I am not yet officially diagnosed but it is headed that way ( I’ve explained a bit more in my welcome post). I am however being treated as having MS for my bladder symptoms and am being taught about self catheterisation at an appointment in the very near future. I have issues with urinary frequency although very low flow and volume, a little incontenence (small leaks really) and quite severe retention. My question is is self catheterisation the first line treatment here? Should l not be offered anything else first? For example diuretics ( l realise they could make some aspects worse but would l would have thought fix the retention). I remember the urologist and nurse talking about some other treatment that they said l wouldn’t be suitable for and that there was a very long waiting list for but l was so tired and in a bit of a state that l didn’t take it all in. Just hoping someone could give me some advice. Thanks in advance:)

Hello Gigi

For many people, intermittent self catheterisation (ISC) is a total life saver. For fluid retention it’s possibly a first line answer. I’ve been doing ISC for almost 10 years and it’s second nature now.

It does take a bit of getting used to. One of the things quite common to women (me included) is that we’re a bit less familiar with our nether regions than we should be! So before you actually have an appointment with a nurse to start ISC, make sure you’ve had a good look at yours with a mirror! The point is to be sure where it is and to know how the opening to the urethra works.

I remember the first appointment I had, I was really quite embarrassed to be trying to do the catheterising in front of the nurses (there were two, one regular bowel and bladder nurse and another from a catheter supply company). It seems odd to look back now and realise just what a prissy girly I was then. Nowadays I’ll get my bits out in front of anyone!

I utterly failed to get the catheter anywhere near the right place that first time. Which shouldn’t have been a surprise because I had no notion of where the thing was meant to go, nor what it might feel like to get it right! Eventually, the nurses left (after one of them did the catheterisation!) and I subsequently received a load of supplies via a delivery company.

In time to come I learned pretty much on my own, using a mirror, sitting on the bed with a collection bag attached to the catheter. Eventually I decided to just give it a go sitting on the loo - it worked first time and I’ve been capable of doing it without a mirror ever since.

I suspect using a diuretic isn’t necessarily the best answer, I’m not sure why I think that, maybe just that using a drug to change the flow of urine seems a bit of overkill. (Don’t quote me on that though - it’s a guess!)

Honestly, the diy method of emptying your bladder does work and it’s not a problem doing it when you go out.

It may be that effective emptying of your bladder might help the small leaks you’ve been experiencing. If it doesn’t, it could be resolved by bladder botox (maybe this was what was discussed by the urologist and nurse?). What botox does is it stops your bladder having spasms, causing the leakage. Once you have botox on your bladder, you’d be incapable of emptying your bladder without ISC until the botox wears off (6 months ish).

I hope this helps. There are countless numbers of us (with and without MS) who use ISC and wouldn’t care to live without it.

Sue

Sue

Thanks very much Sue a lot of invaluable advice there for me to take in (l will definitely be getting the mirror out before the appointment!). I guess it’s not as invasive as it sounds it just comes as a bit of a shock at first but after reading your comments and many others on the forum l think it is something that will just become part of daily life and not seem like a big deal at all when l get used to the idea.

Thanks again you have definitely made me feel more at ease about it all, that means a lot x