Hello, I’m just looking for a bit of advice for those who know better than me, really! I am quite recently diagnosed (just before the lockdown…) and was supposed to have an appointment with the Continence Service, but it got delayed and delayed and then cancelled altogether. I have been having problems emptying my bladder - basically, it is like all the signals are mixed up or something like that! I’ll feel like I need to go to the loo and nothing comes out. And repeat! But then I’ll just be doing something else and it all leaks out with no urge at all. And so I’ve been having a lot of accidents. Yesterday I got a bit desperate, because I couldn’t empty my bladder at all. It got uncomfortable and then it got painful! So in the end we went to A&E and I was admitted overnight. They said I shouldn’t have left it so long, so at least I didn’t feel like I was making a fuss! As an interim they have given me an indwelling catheter with a valve and Oh my God, the relief! It’s so amazing to be able to empty my bladder when I need to and not to have to worry about accidents. I can’t describe how much better I feel! But they say in the long run I need to learn to self-catheterize and I am a bit nervous about it. It sounds complicated and difficult and I’m scared that I will do it wrong. So I’m wondering, does anyone have experience with this? Is it as hard as it sounds? Thanks in advance!
Hey Jessa,
please don’t be scared as ISC - intermittent self catheterisation- is on a very little bit scarey. For me it total transformed my life for the better. I had a different journey to you - I always wanted to go to the loo- a simple shopping trip into town would see me having to go to the loo 4-5 times - I knew where every single loo was.
i went to the local hospital continence clinic to be taught ISC. Yes it is a bit embarrassing having to show your bits and bobs to a total stranger. However they have seen it all before. The nurses are totally kind and understanding to make it as easy as possible. I was given a mirror to start of with to guide the catheter into the right hole, For us ladies there is a choice of 2 holes - the vagina and the urethra - we are wanting the urethra hole for the bladder. The problem is the vagina I found to be the easier wider hole to find. Once the catheter loses its way up there it needs to be binned, Especially if you are on your period. Otherwise you will run the risk of getting a Urinary Tract Infection which for me is unpleasant and best avoided.
Getting back - to begin with it was really difficult to get the catheter in the right hole. BUT the relief was amazing. It gave me more control of my life as I would ISC before going out and no mad dashes to find public loos. I always carry some in my handbag - have a supply in my car - they go everywhere with me.
A good thing was I used to get the catheters delivered to my house - in a plain box - by a company beginning with the letter C - not sure if I’m allowed to name them - but they would also send me bottles of hand gel and small black bags to dispose of used catheters.
it did take me time to get used to it, But now it is really really easy.
Good luck and I hope you get sorted soon.
Min xx
Oh, thank you! It is reassuring to hear that it isn’t as scary as it sounds… It is such a relief to have the catheter in. I was so uncomfortable because my bladder would get really full and I would be going back and forth to the toilet with nothing happening when I got there! And when I leak it is like a major leak - pads couldn’t do much! But from what I understand it’s not good to have it in long term because of the infection risk. And I’d kind of rather not be permanently tubed up if possible!
Hi, I self catheter, best thing for me, I couldn’t stop going to the loo, I went 18 times in a 24hr day, I opnly know this because I had to keep a diary, I now have Botox injected into my bladder and self catheter, so easy to do and now I manage my toilet breaks, not the other way around, you’ll be fine, x x
Thank you so much for the reassurance! It makes me feel more confident that I’ll be able to do it. I feel much more relaxed with the catheter in, but is it normal for an indwelling catheter to feel a bit uncomfortable? Not painful but just weird - I keep getting little spasms, like as if my bladder is trying to push it out!
Hello Jessa
As the other replies have said, ISC is much less worrying than you fear.
I’ve been doing ISC for over 8 years now. Once past the initial embarrassment, it’s now utterly normal. Believe it or not, I was shy and scared of it. I was embarrassed to be having to learn to do it with a nurse. I can barely imagine now just how nervous and embarrassed I was. (Today I am completely open, will talk about anything, discuss all bodily functions and how to go about starting to self catheterise.)
One thing that I suggest women do before learning to use ISC is to get a mirror and have a really good look at yourself down there. As Min said, the urethra and the vagina are way too close together (the design of women’s bodies is utterly ridiculous!). Having an indwelling catheter at present hopefully will make it easier for you to see where the catheters need to go. If you imagine, we have three holes, urethra at the front, then the vagina, then the anus. Often we live our lives without really knowing exactly what is where, and as sensations can be altered, it’s sometimes difficult to know whether you’re aiming for exactly the right spot. Again, as Min said, if you hit the wrong spot, throw the catheter and start again with a new one.
The idea about ISC is that you use a ‘clean’ technique, this is different to ‘sterile’, but it’s important to prevent infections.
Generally, when you first learn ISC, a nurse will talk about how you do it and give you the choice of different catheters to try. There are many different ones available. They vary from very rigid to really quite soft and flexible. It’s worth having a look at the catheters available on a website like (removed by moderator). You could even register with them and ask for a few different samples of catheters to have a look at them before you start.
I’ve used lots of different catheters, I often switch between different types as you, basically to avoid getting a sore urethra from the harder catheter types. Some catheters are designed just to be used sitting on the loo, so the urine goes straight into the loo others can be used with a collection bag or have an integral bag - these are handy to begin with as you can do it sitting on the bed with a mirror. I did this to begin with until I one day just decided to have a go sitting on the loo and it was way easier than I’d thought.
I tend to use Speedicath or Speedicath Eve, and Lofric. Speedicath is a bit more rigid than Lofric, so it’s easier to use. I also prefer the handles on Speedicath or Lofric - I’ve ended up dropping Speedicath Eve as the handles are a bit slippery.
You do have a choice of different companies from whom to get your catheter supplies - Charter, as above, or Fittleworth, Scripteasy, Hollister, and many more. Generally, you order what you need from the delivery company, they then approach your GP for a prescription, once they’ve received this, your products will be sent to you via a courier company. It can take just a few days or a couple of weeks between you ordering and the catheters arriving. The delivery companies usually send you some extra complementary products as well, small rubbish bags, wet wipes, dry wipes and / or antibacterial gel.
Your last question about having an indwelling catheter feeling a bit odd is right. Yes, they can end up feeling a bit ‘wrong’. Sometimes they shift position but basically just having a constant tube in your delicate urethra can be a bit uncomfortable. As you’ve got the catheter on a valve, it means at least you know when the indwelling is removed you’ll be OK with not having a constant free flowing catheter, so you’ll be continent.
Best of luck.
Sue
Thank you so much, this is really helpful! I think I will be glad when I learn to do it. I have this weird feeling that everyone can tell that I’m wearing the catheter at the moment. Of course, they can’t, and I know that really. But it does feel a bit weird, apart from anything else - although not painful, just a bit uncomfy. Thanks again so much for the info!