Failed trial without catheter again...

Thanks Chris, no they didn't give me anything but my husband gave me a diazepam in the night to try and calm me down!

they said i might be more relaxed and find it easier to go at home hence the self cath but it didn't quite work out.

I've seen what Matron said Ellie, and that it doesn't sound psychological at all, but of course you'd be in a panic when you couldn't wee in the night.  The only time I've not been able to wee was the first two attempts at supporting prolapse pessaries after my repair failed and that few moments of wanting to wee but not being able to really frightened me.  Fortunately I could go straight back to the gynie's office and have them taken straight out, but I can imagine what it would be like at home overnight!  When I could wee after the third pessary was fitted I felt like yelling out 'Eurika!'.  But it's a horrible feeling when you want to but can't!  I imagine it's not that easy to self catheterise.  I can't imagine being able to do it.  But you'll get there.  I'm sure you'll soon be putting all this behind you, so hang on in there and just give it a bit more time - this is just a hitch, I'm sure.

Yes you are right it's so hideous when you are busting to go and can't, it's almost like pins and needles. I can't wait until it's all over and I'm back to normal, you really appreciate your health when you don't have it. 

When I just read you'd had SEVEN over the last week .... phew - my heart goes out to you!

I know hideous hey! 

Thank you Matron that's so reassuring. And I agree my urethra is really bruised and irritated, I think I've had about 7 different cathetars in and out in the past week.

With that many catheters ellie it's hardly surprising that you're in so much pain and despite how hygienic you are it's extremely hard to prevent an infection.

Do you think keeping this one in for a week will give the urethra a chance to recover?

Absolutely ellie. It will give your urethra time  to heal and it can do that in a week.

Great! I'm going to relax and stop stressing now. Thank you x

Dear Ellie,

I am wondering how you are doing now?  Do you still have the catheter or did you have better luck with the next twoc.

My battle is ongoing and in all honesty I am not coping too well.

A week after surgery I had twoc.  I couldnt manage to go after 3 hours so the nurse inserted another cath and sent me on my way for a week.

The week later we didn another twoc and this time I was there for 6 hours.  I could not go atall until about 5 hours after I had arrived at the clinic where I managed to go twice albeit very small amounts (80ml and 100ml).  They scanned me after that and said there was no residual fluid left in bladder and sent me home without the cath. I was a bit concerned as I had drunk over 2 litres and was very anxious that I would get home and not be able to go and release it but no they were adament they were happy and sent me home.  3 hours later and I was desperate to go and couldnt.  By then all the fluid had filted through into the bladder and the pain I had was nothing less than horrendous so I had to rush up to the hospital to have them put a catheter in to drain all the fluid.  Around 700ml came out more o less immediately once they fitted the cath.

The they told me they wanted to admit me back to the hospital 3 days later to remove cath and keep me there under observation so off I went few days later and they removed cath. I was fine for around 5 or 6 hours and then exactly the same thing happened where the fluid must have filtered through and low and behold I was doubled over in pain again. thank goodness I was in the hospital and they were able to come in and put another cath in to drain the fluid and release me again of my pain. again a huge amount of fluid drained almost immed into the leg bag which eased the horrendous pain. So they left the cath in then sent me for a VCMG uro dynamic text two days later which was horrid to have to do in this situ while I had the catheter in.  Had the test and sat on commode for 15 mins at the end before anything came out and even when it did there wasnt much atall.. think around 26ml came out. The radiologist said that the bladder was in perfect position had good sensation and that she could see it was active which in her eyes meant this to mean that my bladder will start working again once it is ready.  They had been thinking to operate and insert a suprapubic catheter through the abdomen but once I got those results they were encouraging and so they wanted me to try another 3 weeks with this catheter in and then do another trial just before xmas and if no better maybe look to have suprapubic catheter fitted.

And so I came home with catheter again and all seemed okish until sunday when something didnt feel right and I thought it was an infection or maybe a thrush infection or alike as I started to feel very sore again and also had a painful intense need to go to the toilet even while the catheter was in and I knew this couldnt be right so I was worried.  I was up half the night and by 5am the following morning could see that not much had drained through into the bag and I was doubled over in pain once again even worse that the first two occurences of this happening and this time I was even more worried as I had the pain whilst the catheter was in place.

I called the hospital (always short staffed) and got through to senior nurse who runs around that place at night like a blue a*** fly poor thing and she said she would speak to my specialist and call me back. An hour later still no call and in even more pain. Thought I was going to collapse it was so bad.  Called an ambulance and minimum 2 hour wait and knew there was no way I could wait that long so parents got me in the car ( no idea how I moved into the car because I was screaming in pain by then) and took me upto the hospital.  Thank goodness they saw me and tried at first to flush the cath which didnt work.  Then they could not do anything until they got hold of my specialist and they couldnt reach her but in the end reached another doctor who told them to remove catheter and replace with a new one.  The pain was horrendous I can honestly say that I thought it was the end for me. I am frightened and in tears just thinking about it.  They removed catheter and told me there had been a blockage which is why the fluid was not draining and had all been stored in the bladder and ofcourse as I was not able to release it resulted in the excrutiating pain I had.  Then they put a new catheter in and immediately over 700ml drained into the bag and then in the next 30 mins a further 500ml so I had around 1200ml stored in my bladder.  Given my bladder holds just over 600ml at full capacity I have no clue as to how I got through. I can only say that g-d was watching over me and helped me.

So they sent me homw again with new catheter and as planned I have next twoc on 22 December and am praying for something better.

This has been an ongoing nightmare for me.  I am quite literally at the end of my tether. I pray things can get better.

I would love to know how you are doing with your situation and pray that things have been a little easier for you and nowhere near as painful as they have been for me.

Hope to hear from you. In my thoughts

 

I've just read your post lorelli and sending you hugs and hoping this gets sorted out very soon. I just can't imagine how you must be feeling. x

thank you... feeling terribly down with all of this and pretty much been left to deal with all alone. aftercare has been null and void in the main. .. I am truly stunned. I feel like they operated then wrote me off

clearly they have no time got those who endure complications I feel terribly sad about that. hope things will be bit brighter soon xx

It is dreadful the way you've been left lorelli. Years ago you would have had regular visits from a community or district nurse. I think when this is all over you should write to your hospital trust explaining everything that has gone on. They should be ashamed x

this is private healthcare which is why I am absolutely stunned. thus far they have me feel like a problem patient and I feel like I have been penalised find running into these problems. I am too upset for words and am even suffering anxiety attacks because of it. there have been charges applied for treatment I haven't had and they didn't apologise just wrote back saying it was incorrectly submitted. the poor nurses work under such pressure it is utterly disgraceful and Ofcourse this all comes down to money. you know yourself how much time a nurse needs to help a patient whether it be with a shower, catheter change of anything else

I realise now why some people vow never yo have private healthcare in place and in 30 years I have never witnessed this before. right now the only lotto win I need is to regain my health and try and feel stronger

xx

Sadly I think you may have had better after care if you'd been in an NHS hospital because a lot of NHS hospitals now have nurses attached to gynaecology that you can contact. Does your GP know about your problems? I'm wondering if he could could as one of the NHS gynaecology nurses to see you. Your consultant will almost certainly work at one of those hospitals and he is responsible for your care.

I have a fantastic gp so maybe I will ask but normally when you have used private care they direct you there and in all honesty it would be easier to liase with the queen than get hold of my specilist. I have witnessed something in the private health sector which I never thought I would... a real sorry state of affairs given I think some woman may even need counselling and someone to talk to after such invasive surgery. I have been made to feel a problem just for asking questions re bladder and while I was bleeding anx in intense pain. sometIves a little reassurance goes a long way. never mind I hope to look back on this and recognise my strength rather than my weakness . not atall easy x