ButterflyRainbow Posted October 11, 2013 Report Share Posted October 11, 2013 Hi everyone!I'm a new member and have had a neurogenic bladder for more than two years now.Recently, while also developing several other neurogloical symptoms pointing to autonomic dysfunction and more.I'm having so much pain every time my bladder fills and I get awful bladder spasms.I can't empty it well at all.Probably half remains inside, my bladder always feels 'bloated' and it often seems to feel very tensed up.The increase in Toviaz to 8m doesn't seem to help a lot with this problem So as the days pass, I am having more and more difficulty trying to empty my bladder.My GP said that if I can't handle it anymore, I'll have to go to the ER to get catheterised and be taught how to self cath.My question is that when they do this, and they insert the catheteter to try and empty the bladder-Do they do this by theirselves or will I be asked to urinate through the catheter?Do they have to admit you and you keep it inserted for a certain duration/days untill they teach you how to do it?I am sorry if this question is quite odd, but I am quite stressed about this because the thought of having to pee infront of a lot of people and being at the ER aswell-doesn't make me feel comfortable at all especially while being in pain.And I definitely don't like to be admitted, as I already have to be admitted for other things in less than two weeks. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 11, 2013 Report Share Posted October 11, 2013 Why not see a urologist instead of waiting for the trip to the ER? That way things can be addressed in a non-urgent timeline, and at the doctor's office.Do they know why you have a neurogenic bladder? Quote Link to comment Share on other sites More sharing options...
ButterflyRainbow Posted October 11, 2013 Author Report Share Posted October 11, 2013 I have seen one and he knows about my neurogenic bladder- Ihave another cystometry scheduled and also a cystoscopy.But the waiting list is untill December.That's why the ER would be my only option, getting an appointment is impossible unless I want to wait 4 weeks+.I developed my neurogenic bladder not long after my Lupus diagnosis.And they suspect the autonomic dysfunction must also be an Auto-immune thing.I also have orthostatic bloodpressure and a lot of other things. Quote Link to comment Share on other sites More sharing options...
kitt Posted October 11, 2013 Report Share Posted October 11, 2013 . Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 11, 2013 Report Share Posted October 11, 2013 Oh, don't you hate long waits for appointments!! So much going on can really complicate things(Lupus, etc.). I hope someone can give you great help. Quote Link to comment Share on other sites More sharing options...
ButterflyRainbow Posted October 11, 2013 Author Report Share Posted October 11, 2013 Thank you for the tip Kitt.Belgium is a quite small country, so most of the PT's have their specialisms but it might not be the same as over there in the US or the bigger cities.Maybe they have even more experience there or work more with these kind of conditions.But I did try pelvic therapy before, I know most of the tricks to get my bladder to try and relax etc.But only meds have worked for me, I just have a feeling my body is picking on my bladder and it's worsening it.So meds do still work, but the condition itself is getting worse.Yes, definitely Sue!It can be so annoying and tiring, all the waiting and having to come up with a plan B, plan C if needed.Thank you so much! Quote Link to comment Share on other sites More sharing options...
Racer Posted October 12, 2013 Report Share Posted October 12, 2013 I have just been threw that, I had a catheter for almost two weeks. I have a couple threads about my experience. I wasn't admitted, they inserted a foley catheter, and it was actually treated as a very quick routine procedure. They acted like people go all the time to the ER for catheters. It was just one person, in a room who did the catheter, in about 3 minutes or so. The nurse sent me to use the restroom first, then did the catheter, covered me up, and left me to "drain" for 30 minutes. The nurse then measured the urine that drained (the amount retained), hooked up my leg bag, gave me some quick instruction, then sent me on my way. The only time I was exposed was during the 3 minutes they took to insert it.For me, the only option they gave me was a foley catheter! Once you get one of these in, be prepared to deal with it until someone decides it is time to remove it, since you wont be able to remove it yourself. With a foley, what I would consider a minimum, make sure you get the bed bag (for sleeping!!!), leg bag, have extra surgical lubricant, strong tape, and maybe a under pad for your bed (in case urine leaks around the cath).I wont lie, it is a few minutes of slight embarrassment, but it could always be worse! A few months ago I found myself in the ICU having my butt wiped by nurses, who would never fully close the curtain to my room! You think you would never be able to handle the embarrassment of these sort of situations, until they happen, then you are so thankful for people out there willing to do a job like this!!!I dont have any experience with intermitent caths yet, but I am in the same boat with urine retention Quote Link to comment Share on other sites More sharing options...
corina Posted October 12, 2013 Report Share Posted October 12, 2013 Hi ButterflyRainbow, welcome to the forum! I'm sorry you're having these problems and hope you'll find answers. You and I are kind of neighbors, I'm in the Netherlands Quote Link to comment Share on other sites More sharing options...
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