Unable to Urinate - Urine Retention

[Ilovefluffysheep]

I had major bladder surgery back in April which sadly didn't work. Last week I went back in on Wednesday to have a bladder stretch under general anaesthetic, and also botox injections to my bladder. Have had these before and they didn't work, but now have a new lining which is why they're trying it again.

Anyway, since my op on Wednesday, I have been unable to urinate without using a catheter. Literally can't go at all. I was told the botox would take a few days to take effect, so don't think its that.

I am self catheterising which is all fine, got the hang of it. However, when I empty my bladder, it doesn't stop the sensation, so I am literally spending all day every day feeling desperate for the toilet. I am also using a lot of catheters, around 7-9 a day.

I thought the sensations might wear off as the botox kicked in, but nothing yet. I am waiting for the specialist nurses to phone me back, but wondered if anyone had any experience of this? It really is awful, and whilst I can manage it just about when lying down/sitting, walking around is horrible, and I am also struggling to get to sleep as I just feel like I really need to wee all the time.

Oh you poor thing- what kind of op did you have initially?

Most people who have Botox for overactive bladder are warned that it can stop you being able to wee because it paralyses the muscles.

Did they mention this?

It sounds too as if you might have an infection- have they tested you for this? Anything being put into the bladder during a procedure can be a risk so were you given ABs as a routine step?

The Botox should eventually wear off and then you will be able to wee again normally but it may take days or weeks- you need to talk to the drs.

Big op in April was a clam cystoplasty - bladder cut in half, lined with bowel and made bigger. Didn't work, been weeing naturally since and just popping a catheter in every other day to check for retention (not much) and to do washouts.

I know the possible effects of Botox, however was specifically told it takes 3-4 days for the Botox to kick in, so was very surprised to have this happen straight away. Dr google (sorry!) suggests that urine retention can be a common problem after general anaesthetic, but have had 14 operations and never had it before. Also, my previous Botox, a couple of years ago had no effect at all, but am very aware of what could have happened and was taught to self catheterise before that one just in case, but never needed it.

Yes I was given antibiotics after the op. My gp has just phoned to discuss and suggested it could be an infection, so got to do a sample tomorrow (not sure I've got enough hands to get the catheter in and direct into the sample pot, but will do my best!). Obviously they have to send it off and be careful with it, as due to having bowel in there it will apparently automatically show signs of infection - no idea how they differentiate between that and any other infection!

Still waiting for specialist nurses to contact me, as obviously they know a lot more about it than gp. Really have no idea how often I should be catheterising as the feeling of needing to go is constant.

I don't expect it's an exact science when the Botox kicks in- there must be a variation? Added to which you now have a new bladder lining- the old one perhaps didn't 'accept' the Botox which is why it didn't work?

If you don't mind my asking what was the purpose of the Botox?

Is it something you will need repeating often?

The purpose was to try and stop my frequency - before my big op I was going 12-15 times a day, after it went up to 15-20 times a day (it shouldn't have got worse and no one knows why it did).

Unfortunately my recovery from the big op was difficult, and didn't really follow the pattern of other patients (I had to spend 8 weeks with a supra pubic catheter in and was basically bed bound as it caused so much pain and irritation to my bladder).

Nurse has phoned, and again, they haven't had someone react like this - they used the phrase "uncharted territory"! There is still a chance the Botox May start to work and the sensations could calm down, Botox is also an irritant apparently, so may take some time.

Will do my sample tomorrow for gp to send to lab, need yo ensure there is a note with it so the lab know it will show E. coli due to the bowel. Other than that it seems to be a waiting game, and a very uncomfortable one at that.

you were brave to have such a big op.
Have you tried the usual things and treat it as if it is an infection- eg a bit of bicarb in water might settle down the feelings a bit.
Hope you get some help soon.

Thanks pinkfrocks. Haven't tried anything as no sign of infection other than permanently needing to wee. I'm not really expecting it to be that, think gp wants to rule it out just in case.

If it doesn't improve I don't know what on earth they're going to do with me, I think I have them baffled! It was a very big decision to go ahead with the op, I've been offered it twice before many years ago and turned it down. However, frequency was just getting worse and affecting my whole life, and I felt as if I had to give it a try or I'd always be wondering "what if". Seems as if the gamble hasn't paid off, but I guess that's the chance I took.

Did you have IC? or OAB?
Did you try all the usual drugs etc and diet- am sure you did.

Are you aware of the website COB? Well worth looking at and they offer support.

I have had a complete inability to wee after general anaethetic.. every bloody time! (not that I make a habit of generals , but have had a few ops) I didn't know it was common! I also felt desperate to wee even after catheretizing.. so it may yet wear off, with the double whammy of botox irritation your bladder may be really pissed off:( It takes mine a good week to work properly again (I'm also a wee every hour person but haven't had any ops to sort it)

Hope it does settle for you soon.. it's horrible. Incidentally my DD1 had her first general recently and had the same inability to wee by herself for a week.. I thought it was just me!

What volumes are you getting when you catheterise? Infection is another cause of retention so I would get a sample off as well to cover all bases.

Pinkfrocks I have oab. Yes to drugs, diet, bladder training etc. Am also a member of the forum run by COB and put a post up there but no replies.

Medusa - it definitely is common according to lots and lots of different websites, but I've never been told about it, and never suffered retention after the previous 14 ops I've had (not all bladder!). It's interesting to hear you had the desperation feeling like me and it wore off, gives me some hope!

Wobbly - not measuring volume yet, currently trying to work out how I'm going to do that as got to do it next week for 3 days. I sit on the toilet to catheterise and without being too graphic, it's already a 2 handed job, and not sure how I can direct the catheter into the jug without another hand! Friend suggested I buy a washing up bowl that I could place into the toilet and pee into using catheter, then transfer into jug!

Sample has gone off this morning to check for infection.