I am trying to come to terms with the fact that the time has come to have a perminant catheteter. I have read lots of info online but one thing confuses me.
I suffer from urinary retention 90% of the time I cannot pee at all. But I also have occassions of urgency for which I take tablets that leave me with a extremly dry mouth to the point I grind my teeth at night, and still are not that effective But as far as I can see if I have this done I will still have to take these horrible tablets.
Hi twist, I’m also waiting to have a supra-pubic catheter fitted. My neuro said he was going to arrange for it to be done urgently when I saw him on January 9. Received the so called urgent appointment on Monday for April 3. Have spoken to my GP who is getting it changed. Are you catheterised at the moment? I now have a permanent catheter because I have lost the grip in both hands so can no longer self catheterise. I am the opposite to you where I wet all the time as I have no sensation I need to go.
I have a supra-pubic catheter and take solifenacin/vesicare. I take these as you will still get the bladder spasms. This stops the bladder going into spasm so often, you may be taking something else?
If I can give you one tip when you do get one- is to drink shed loads of water to prevent blocking. I used to suffer from the same as you twist with retention and urgency , it really gave me a new lease of life once you get used to the tube being there!!!
l have had a SPC for the past 18yrs. l do not take the dreadful tablets - l know how you feel - that dreadful dry mouth and they use to make me gag! - l can remember telling the urologist that before he prescribed them to anyone else he should try them himself. Having a spc changed my life - no more wetting - no more being padded up. lt was all so degrading. l was sure l squelched as l walked along! Now l can travel anywhere - stay in bed all night - and ‘pee’ standing up - what us girls have always wanted to do. l can wear tight jeans/shorts etc with no problem because l use a short female length catheter and a direct valve drainage bag - so no lengths of tubing to get kinked. You might find you can manage with a flipflow valve as you suffer more with retention. l take LDN and Sativex which both help with stop spasms. l very rarely get uti’s -which was a problem prior to having this done.
pm if you need anymore info.
Life will become easier once you have had this done and got use to it.
Hi, for anyone struggling with the side effects of Vesicare I would suggest talking to your gp/urologist about Kentera patches - my urologist prescribed them as i I couldn’t get on with the Vesicare tablets (horrendous dry mouth and fuzzy vision) and the patches are supposed to be easier to tolerate. I am only on my second patch so cannot fully say if they are as good as the Vesicare tabs but the dry mouth is definatly better but I am getting up more in the night. My gp says they take time to get into your system so here’s hoping! Could be worth a try!