Failed trial without catheter again...

Hvae just seen your note.  I am so sorry you are going through this too. I have just been through it and totally understand how you must be feeling as I was exactly the same as you.  After having my surgery close to 7 weeks ago I have only just regained the use of my bladder and like you was extremely anxious about the whole thing infact it was the most frightening and painful experience I have ever had.

My bladder didnt work either so they sent me home from hosp with a catheter and then I had a twoc each week and on the second one where I managed to pass two very small volumes did they let me home without the cath which was a huge mistake as three hours later I was doubled over in pain with a huge amount in my bladder which I was unable to void.  To cut a long story short I had to be rushed to hospital in intolerable pain and have urgent cath put back in and so it goes on.  Thereafter they put another catheter in for 3 weeks which came out a few days ago and thankfully by bladder has now resumed and I can go alone.  even though things do not feel right and I still have constant urge and pressure etc... I am happy to be without the catheter infact elated would be a better word.

What I wanted to say to you after reading your post was that I think you should definitely get referral to a urologist or uro-gynae.  What they did with me after the third twoc is that they sent me for uro-dynamic test which basically will show the state of your bladder and confirm the support structure and whether there is sensation which will in turn confirm that the bladder will start working again as it did with me but that it will take time.  I had no support structure from the person caring from me which made matters a thousand times worse and I sympathise with you.  If you can get referred for the test or to see a uro-gynae it will put your mind at rest as it did me and they told me that the muscle had merely gone to sleep following trauma of the surgery and the bruising and swelling and that it would start working again. I am sure it will no different in your case.

If you need any more info please feel free to private message me as I have just been through what you are going through and it is the worst thing I have ever experienced. I have no clue how I got through and the anxiety it caused me I am still dealing with even now.

There is a light at the end of the tunnel and it will all start working again but it may take a little time especially after ther surgery you had. 

I hope my note goes some way to help...  Fingers crossed for you that your bladder resumes soon...

in my thoughts xx

Hi Lorelli

Thanks for your words of encouragement. It's reassuring to learn that others who have experienced the same problems have come through it and now have a fully functioning bladder. It's been about 12 weeks of needing an indwelling catheter and I am frustrated by the whole thing. I now have to wait another 6 weeks before I have another appointment hopefully I can get to speak to a urologist next time and get that uro-dynamic test.

Thanks again. Here's to a healthy 2016 for us all. xxx

I really do understand. I have a good friend who had similar surgery to me 6 years ago and she was left with a catheter for two days and was in despair. I had mine for 6 weeks which was awful and I know you have had yours longer but it will come back when it's ready.

have they given you a flipflow valve for the catheter atall? this is a small valve which fits onto the end of the tube which allows you to close it off with a kind of plug for a few hours rather than draining into the bag and the purpose of it is to geg some spasm back into the bladder to add the sensation for it to start working again. I used that a bit and max I could close it off for was 3 hours before I had a pressure feeling and had to release it but even doing that a few times can help. your gp or local chemist or hospitAl where you had care should be able to arrange.

I had no support structure from my specialist after surgery which made things 100 times worse so really happy to help in any way I can. I would speak to your gp and ask them if they can arrange an urgent vcmg test for you which is not unreasonable given the time you have already had your catheter in and also get an urgent referral to a uro gynaecologist which will put your mind at rest if nothing more.

the catheter part and my bladder not working was much worse for me than the actual surgery and it is something you cannot describe to anyone as it is frightening beyond belief but it will get better for you and if you can arrange the flipflow that coukd help too rather than just draining into the bag..

here to help if I can xx

Thanks Lorelli,

Yes, the district nurse has set me up with a supply of flipflo valves. This makes life easier - no bag. Hoping it helps my bladder to get back to normal function soon. It's as depressing as hell and much harder to deal with than my surgery. I was also left with a temp colostomy after surgery. This, surprisingly, is easier to cope with though naturally I'd rather not have it. I think because I know I will be having a reversal operation (possibly in Jan) I can see the end of this indignity. However, not knowing if or when I will be able to pee natually is much harder to cope with. Friends tell me to look at the positives - all cancer was successfully removed and I won't be needing chemo. Easier said than done when you have a tube permanently dangling between your legs! I realise there are people with more serious health issues and I should count my blessings really.

Thanks again. xxx

so pleased she gave you some flip flow valves as they will definitely help. I tried to do 2 or 3 hours and nearly managed 4 hours once but the pressure was too intense.  How do you get through the night with the flipflow?  I used a bag for much of the time but I produce alot more fluid than most so opted for this instead to try and get through the night.

Thank goodness the cancer has gone and you dont need chemo.  This is wonderful news..  There are many people worse off than us but our individual problems sit with us and are our own and each of us understandably finds it difficult. 

The catheter was very very difficult for me as after I had the anterior and posterior repair I was very sore and having had so many catheters put in and out made it even worse.. some days I could literally hardly move and when I got out one position was when the pain set in,

I dont know if you have that pain or any burning (I had that too) but if you do the only thing I can suggest is what helped me which was cold camomile teabags left in the fridge.  A gynae told me about this years ago then a friend reminded me last  week and I did it and it did go some way to relieve me.. I even left one in overnight. I boiled water and drenched the teabags and let them cool down then drained the water and left them in the fridge for few hours then placed one down below where the tube fed in and it really helped.  If you look it up online many people swear by it. 

Fingers crossed for you cath will come it soon.  It will all come right just that some of our bladders go to sleep for a little longer after all the trauma following surgery xx

Hi there,

I'm sorry to hear that you're having difficulties with your bladder since having your surgery. I was the same after mine and found it very upsetting that I wasn't able to pee at all on my own afterwards.  I was told to go home with a folley catheter too, but chose to self cath instead. It was a little bit fiddly in the beginning but soon got used to it. I had to self cath every 3 hours for nearly 6 weeks which was perfect bladder training because all is well now at 8 weeks. I was shown once and then left to get on with it. It's amazing what us women are capable of when we have to get on with things! Honestly it sounds much worse than it actually is and maybe something for you to consider. x

I'm so pleased to hear that your bladder has woken up and that you're now catheter free. I was waiting to hear from you, but can see that all is well after reading it on here. It's such a relief isn't it and amazing how we take such simple bodily functions for granted. I hope you had a lovely Christmas x

you wont believe that I typed out a huge message to you again and lost it!  URGHHHH!  Going to resend in a few hours time to update you properly.  Still not great... will message you soon.  Hope you are a little easier and had a nice xmas with the family xxx

I've missed some posts somehow, btu Lorelli, I am absolutely delighted you are now catheter free.  A Happy New Year to you and all!

just sent you a very long Pmessage! Make a cuppa before you read it or may be best to pour a large baileys    happy holidays xxx

Thank you so much my dear for your kind words. To say i am happy that the cath came out last tuesday after 6 weeks is an understatement...  I was there for close to 8 hours before they let me go but after 4 voids each 2 hours (first two small amounts 50ml ish then second two voids 100ml ish)  they agreed to let me go without the cath.  I was very very anxious to come home without it after having been in as an emergency quite a few times when I came home without cath and could not go and had to have emerg cath but thank goodness I was able to go when I got home.  Things still sore and also came down with tummy bug so had upset tummy which didnt help any as friday night I was up weeing every hour so was pretty petrified but realise I have to now give things time to try and heal and to see if this surgery has helped any as with catheter in place for all those weeks it was impossible to tell whether there had been any improvement but hope now that with cath out healing can begin and things may get better.  Lord knows I am praying hard for it.

Been the most difficult and painful 6 weeks ever for me.

I hope that by posting my notes on here I can help other women who like me have been left in the lurch with no support structure and nobody to answer my questions.  This forum and talking with diff ladies and ofcourse the lovely "matron" has helped me more than any of the people within the private healthcare who have been caring for me at a very high cost.

Thank you again.  Fingers crossed going forward that I will see some improvement from having the surgery.

Wishing you and your family happy holidays with only good health going forward into 2016 xxx

Yes, I hope everything is going to be better for you now and that 2016 is a REALLY good year for you:-)))

thank you.. fingers firmly crossed xx