My appointment with continence nurse

Hello again. I had my appointment with the continence nurse and it went very well. She was really nice and has diagnosed an over active bladder, which may or may not be due to ms. The bad news is that I can’t do anything with my pelvic floor muscles, but I already knew that! The good news is that it can be treated with drugs, but I have to wait for the nurse to write to my gp for him to prescribe them. The bad news is that they might suppress the bladder to the extent that I may in the future have to self catheterise, something I don’t want to have to do, and am not sure I could actually manage to do. But she even managed to make that sound positive. There is one thing I forgot to ask, and maybe some of you will know. Might I be able to give up the pads, which I use because of urgency, or maybe go back to thinner, lighter ones?

Hi Flowerpot, I started ISC last week and was in the same position as you, I didn’t relish the idea, but it is easy once you get the hang if it and it does make a big difference. I am still using pads a week in but can see that I’ll be able to dispense with them soon. I think we hang on to using them just because we are so scared of accidents and are so used to having that security. Continence Nurses are really good and know exactly what they are talking about so please take any advice they offer. Good luck and let us know how you get on. I was scared in the beginning but it doesn’t hurt and isn’t messy and you will be so grateful. Linda x

Hi, I used oxybutynin for years, for an over active bladder…also called a sensitive bladder. I did use thick pads, as my mobility was poor and I couldnt get to the loo in time. If your mobility isnt too badly affected, then yes, you may be able to use thinner pads eventually or even none at all…

The tablets did cause me a very dry mouth, which has rectified itself since coming off them. I now have an spc, so dont need them.

Like you, my pelvic floor did not respond to exercises, as I had lost all feeling and tone.

Re isc, dont worry about that now…it may never happen. But as we get used to doing things which help our condition, it is amazing how we can adjust to stuff we previously dreaded and felt horrified about.

My life and abilities have changed so incredibly, that if anyone had asked me if I could see myself, in the future doing what I do now, I would have been aghast!

luv Polx

Ask your GP - if he can prescribe Betmiga. lt is the newest of the bladder control meds. And is very different from the ones they have used for years. None of the ghastly side-effects. Google it. Oxybutinin dries ‘everything up’ - l found l could not speak because my mouth was always dry - and it made me gag. Detrusitol is the same.

Lots of folk on here do ISC- and soon get the hang of it. lts easier for men - as they at least can find the right spot!!

A good tip - l saw on here - was - pop a tampon in the lady area first. Then you know you are nearly there.

Thanks for replies - very positive ladies. My mobility is poor, so getting to the loo in time is an issue. I don’t yet know which drug I am going to be prescribed, but am trying to take my own advice - trying not to worry about what might happen, because it might not. I’ll share my experiences with you though! xx

Hi Flowerpot.

I ISC and have done for 5 years now. I also have botox for my overactive bladder and this has by far been the best solution to the problem. I still use a mirror to help with ISC even though I’ve been doing it for ages but I think this has helped to lessen the amount of infections I have suffered from. Don’t worry too much about it as it really is simple once you know how and you can get catheters that are packaged like tampons so people wouldn’t know any different and you don’t need water to lubricate them (I use LoFric) so it can all be done without needing to access a disabled loo. I hope you find a drug that helps, I found Detrusitol helpful for a while but with a neurogenic bladder I think Botox really is the answer if you can get it. They seem to put you on a certain number of meds before you qualify but you could ask. I know it’s all about cost but the effects are immense.

Anyhow, good luck with it all, it really will help your life and I don’t use pads any longer unless I get anxious about a long journey but that’s it.

All the best.


Well, I got the tablets. Vesicare as someone predicted when I first posted about being referred to a continence nurse. Had the first one today and am doggedly optimistic. However I am still anxious about the possibility of self catheterising, so much so I have even dreamt about it! I know, no point worrying about what might happen because it might not. (That’s the best bit of advice I ever had on this site, and trot it out regularly, even though I am not always great at taking it!) Anyone any comments for me? xx

Hi, I tired vesicare…worked the same as oxybutynin for me…ok…it was my rubbish mobility that did for me!

give the tablets a chance, yeh?


I would just like to add that I was suddenly having quite some problems with urge incontinence, and thought it must be my MS. This wouldn’t have been surprising, as I have a spinal lesion and difficulty walking. I was becoming reliant upon Tena Lady. But I discovered that there was an association between having canned tomatoes containing citric acid as an acidity regulator and spices, particularly cinnamon. When I cut these things out, everything returned to normal. And I find that drinking green tea helps.

I’ve been ISCing for 2 years now and wouldn’t go back. To begin with I had to use a mirror and bag (kind of reclining on the bed) but for about 18 months I’ve been able to do it without looking so can do it on the loo (therefore much more discrete). I still get the occasional infection but it’s less common and I worry so much less about wetting myself. I used to think men have it easier with ISC because they can see where to thread the catheter but once I realised the catheter had to be about 3 times as long for men, I changed my mind! I started with Actreen but changed to LoFric because they’re softer. Then I changed again to Speedicath Lite Mini because they’re a bit shorter and a bit less bendy. So if you do find yourself using them, you can easily try a different kind and swap. Good luck.

Thanks everyone, the comments above have been really helpful to me as I am reliant on tena for “accidents” and urgency reasons and had wondered about catheterisation and medications. I have been bothered by infections and my GP has just treated these as and when they happened but she doesn’t seem too bothered by the incontinence as the tena pads help me manage it. She obviously doesn’t have a clue about the emotional effect of this on a 36 year old woman! Im always sure that everyone knows when I have had an oops moment and feel so upset by it! How do you guys deal with the emotions of it all?

Hello, and thank you for all your replies. I still hope not to have to self-catheterise, but all you have said has been really helpful, and should the need arise if you all can do it then so can. I have had the tablets for a week now, not really suffered any side effects, only slight dry mouth, but nothing I can’t deal with. There has been an improvement, not so many trips to the loo, and not so much urgency. Tena’s profits will be going down! I am no longer sure what is normal, and I think I may still be going to the loo more than most, but maybe that is partly out of habit. So far so good eh SharMac, do ask your gp about medication, and/or ask to be referred to the continence team, your ms nurse, if you have one may be able to refer you. I suffered in silence for a long time, now I’m wondering why I didn’t ask for help earlier. xx

Hi Flowerpot, I should own shares in Tena Lady, I was just about keeping them going single handed! Ask your GP or MS nurse to refer you to a continence nurse. I struggled for two years until it became unmanagable and I started ISC three weeks ago after having various continence tests and I was scared about it, but it’s so easy and it doesn’t hurt and I’ve got it down to about five minutes. Not good enough yet to do it without a mirror but I’m not sure I have the confidence yet. Get your situation sorted out and do not struggle any longer. Good luck. Linda x

Thanks Flowerpot, thats what I will do. Ive been too embarrased to do anything about it and only mentioned it to my GP a month or so ago when it got worse. Good luck, hope to hear how you have got on.

Sharon x


Oh so true. It’s a whopping 40 cm’s. The male catheter, I mean. LOL.


Well, I am now in week three on vesicare. It seems to have resolved the frequency issues, and urgency has been rather less of a problem, except for two or three times. I’m still worrying about self catheterising though. Questions for those of you that do. Is it alongside the medication or instead of? How soon after starting meds did you have to s-c? Thanks friends xx


i started to self cath because i was retaining far too much.

for anyone who needs to start seeing a bladder nurse, you can self refer to bowel and bladder clinics, they have advertised on tv.

the nurse will scan your bladder - a bit like a pregnancy scan (but without such long term side effects!)

this will show if you are retaining and how much.

good luck, dont be scared and get it sorted now.

carole x

Sharon, how do us men deal with it emotionally? There is a certain amount of dread especially around wetting yourself at work. I used to be embarrassed about how my family would respond, but my wife is great and I have now given up hiding all the pads from my kids, as they arrive on the doorstep in three large boxes at a time; usually when I am not in, and kids being curious, and then there just isnt the space to hide them all. I have started using Betmiga and its eary days yet, but I notice I am less likely to get up in the night. I think one of the problems with the medications is that they often improve things but maybe not to the point where you can confidently dispense with the pads. Afterall, even if they made it 10 times less likely you will have an accident, that is still a lot of accidents if you were having them daily, and even one public accident is too much to live down!

My problem is I don’t go much and for years I’ve always needed tl go all the time since I was little really. Was a standing joke I knew where every toilet is. And pelvic floor - kids do nothing to help that good job I love them haha. I’ve got an appointment in for a US pelvis (transabdominal ) scan. My doctor requested it after she did my smear and internal. But she muttered it under her breathe saying she was requesting one. She knows I’m a worrier lol. So I don’t know what it’s for. X

Has anyone bought the electronic pelvic floor thing from amazon? Wondered if it might help. X