For a year I have had difficulty passing urine. It has now reached the stage of not being able to pass any at all and then incontinence. Seeing urologist later this month. Anyone know treatment for it? Thanks
Likely to be self-catherisation, I’m afraid, but there may be drugs they can try, before jumping straight to that.
I’m a long way behind you, but headed in the same direction. Hesitancy is getting to be a problem, weak flow is getting to be a problem.
Saw the continence nurse about it last year, and no serious retention found - i.e. I am getting there…eventually. But have to really think about what I’m doing, and sit on the loo for ages, picturing waterfalls. It’s a long time since it all just happened automatically, the way it should.
Thanks Tina. I had a feeling that’s what coming. GP was pretty convinced it’s MS symptom. But he decided he would wait til he spoke to neuro before talking about treatment. He rung to confirm its MS related after speaking to my neurologist. Saw nurse who basically said pads are to keep me going til they find out more, then mentioned catheters. Then neuro rung to chat through process but the final alarm bells were when she said I can’t have meds for it because it will make voiding worse…so I had a strong suspicion it’s gonna be catheter. And to add insult to injury I have a uti. When I rung surgery the receptionist told me to get powders from chemist. First I knew they are trained in medicines! Ringing surgery tomorrow. Powders are not touching it!
Regarding going to toilet. Don’t you miss the old days where you just sat on toilet and it happened. I move around, use muscles run tap … Oh I would not wish this on anyone. Hope your resolves before the need for catheter xxx
Hi, the bladder problems really get you down, I know!
The continence service are good…they are very knowledgeable about what to try. I think it’s normal to see them before a urologist.
I’ve been through most ideas, all which worked for a while. I now have a suprapubic catheter, due mostly to having zilch mobility. I was also having severe retention and urgency.
I don’t think tablets ie oxybutynin, vesicare or betmiga make voiding worse! They are meant to relax a bladder and stop it voiding!
Anyway, I do hope things become better for you, as this problem can be quite upsetting.
Thank you Polly. Sounds like you have been through the mill! Xxx
I already have an inflammatory arthritis similar to rheumatoid arthritis, so the pain pins and needles etc have been manageable but this is not. To be honest I am at the stage of trying anything to help! Thankfully even though I have the two conditions my mobility is not too bad but I’m trying to imagine catheterising with a tremor eeeeek !
Hi, in the spring i had a relapse, only a minor one but it was mostly that i couldnt go to the loo at all, to pass urine. The pain after a few hours was unbearable. I had to ring in sick to work and i thought i would never be able to go. However eventually after hours i managed, but i reported it to my ms nurse who referred me to the continence nurse.
I had my appointment with the continence nurse a few weeks back and i had a bladder scan, an examination and was given a goody bag full of catheters to try out. I have since been glad of the catheters as my bladder has gone into spasm again but this time, no pain as i just used a catheter.
I have found it very upsetting to have to use catheters, but quite simple to do, i have problems with numbness in my hands so it has been trial and error with the different ones, but i have now decided on one that i can use.
Really all i wanted to say(after all that waffling) was if you do have to go down the catheter route, its not that bad, and its better and a lot less painfull than not being able to go at all.
Good luck and i hope you get sorted soon, oh and on the plus side, im now the owner of a cute handbag illuminated mirror curtesy of the goody bag.
I’ve been ISCing for 3+ years. Although I have trouble with my hands, I manage with catheters. If you do end up trying them out, I suggest you get a load of different types from the continence nurse and try them out. Ask for enough of each type that you can properly give each one a go. The trouble is that when you’re faced with a wide variety and asked to pick one, you may as well be shutting your eyes and pointing. If you’ve never done something, you don’t know what’s important, or what problems your hands will give you. So try out several types. It’s not as difficult as you think and if your problem is not being able to wee at all, it’s a godsend. I now use a catheter pretty much every time now, my external sphincters just will not release, so although the inner mechanism sends me the message that I need to go, I could sit on the loo for hours and I’d get no more than a tiny trickle.
For me catheters have been a simple answer to a big problem. If you end up having to do it, I’m sure you’ll find it less of a problem than you fear.
Thank you so much!! So reassuring I am far from alone. I am getting scan on the 19th at prostate clinic would you believe made neuro laugh too! It was the first free appointment. My worry is that there the odd day I can go. I’m worried the 19th is that day. The neuro reassured me it won’t matter they can still tell. I get cramping at my lower stomach and a few days before I started the worst bout of incontinence I had extreme pain in my left kidney. Pain went went I eventually was able to go. Does that sound familiar? Thanks again xxxx
Generally I tend to be able to wee about once every few days (unless I have a UTI at which time I have been incontinent - it’s actually a good indicator for me to check my wee for infection). They’ll be able to tell your retention level on the day you have the appointment, but will ask you for whatever is normal as well. Before I started on ISC, I had several bladder scans. But ultimately it’ll be your choice what you do. I’ve not had kidney pain. Maybe they’ll arrange for an ultra sound scan of kidneys and bladder. I had one a few years ago, I can’t quite remember what caused the Dr to arrange that!! But it was fine in any case. Hopefully you’ll be OK at the prostate clinic. Just make sure they don’t start looking for a prostate! They might have trouble finding one!!
Thank you Sue. Just back from docs regarding urine infection. I think I am similar to you. Mostly no wee or trickle eventually. And was just telling doc about increase of incontinence since urine infection. Shows how much wee that we leave in…after constantly spending time in loo having lots of little painful trickles…then there’s more when you leak!!! I hope I find out on the 19th what’s going on and how they can help. I’m back at work on Tuesday and dreading it. I need to go to toilet every 2 hours yet I am easily distracted and with no sign I need to go I end up leaking! Using super sized pads just in case and emergency pants and leggings just in case I have big leaks. Oh what joy. NOT.
many thanks again Sue x
I really think the most important thing is to make sure the exact bug you’ve got has been identified (ie. make sure your sample’s been sent to the lab and they’ve got the results back so are giving you the most appropriate antibiotic). Once you are infection free then you can concentrate on the voiding issue. When my bladder was first scanned, ten years or so back, there was no real residue left, but 3-4 years ago when I started to use catheters, there was a significant residue in the bladder. When you first start to ISC, they tell you to first wee as much as possible without the catheter, then to fully empty using a catheter. And they suggest you do it twice a day, morning and evening. I started on this but within months was doing it lunchtime as well, then more often and now it’s all the time. I can only occasionally start to wee without a catheter, so to be honest, I’ve probably made the problem worse by almost always using a catheter without trying very hard without it, so I use 5-6 catheters per day. But then I might be exactly where I am anyway regardless of the times I try to go without a catheter!
If you do decide to start using catheters I suspect you might be surprised by how much more comfortable you feel. Plus, once you get a prescription sorted, the delivery company can generally sort out any problems you have, or changes to the type you use etc.
Hi Sue, I have to go back in on Monday. The antibiotics certainly seem to be working so far! Thanks for the tips on ISC, I will make sure I do try first. i will keep you updated, although to be honest I am guessing this is like all the other MS symptoms, it will get worse so you may have been in same situation even if you tried first? I have heard nothing but positive feedback on the ISC so I hope it will help me. Today was my first day back onto weak urine stream since UTI started. Started getting bladder spasms already! Thankfully less painful than weeing glass!