Failed trial without catheter again...

Pearl I'm so sorry you are going through this too, it's awful isn't it. Please let me know how you get on tomorrow, I hope it's sorted. x

did they give you an explanation why you were having difficulty? How long ago and what op did you have? 

I had my operation last thursday 19/11/15. That was a walk in the park compared to this, I really do not know what to expect tomorrow. My operation was for prolapse bladder/bowel and mesh support. I really do not know how I would have coped without my husbands support. I hope they sort you out quickly.  

We are on the same track except I had mine the day before with no mesh but also perineum repair. I agree this has been the worse bit. I had got to a point where I wasn't in pain from the op until I had this UTI cath problem. Are you in the States? Good luck tomorrow.

No in the UK Plymouth. Thank you for the good luck.  I think I am going to need it. I really do not want to come home with another catheter. 

Hi Ellie just back from the hospital and I'm very pleased to say I've passed it. Took it really slowly, stayed relaxed, and felt so confident that my infection had caused my earlier problems. I would like to wish you well for next week. 

Excellent Pear - pleased to hear that:-))))

Sorry - that should have been 'PEARL'!

Pear that's wonderful news, I'm so pleased for you. What a relief. You must be so glad to come home catheter free. I hope your recovery will speed up now x

Hey thanks for your kind words. I'm hoping by tomorrow the anti-bis kick in.

yes I guess they probably don't know exactly why. 

Hope you are recovering well.

Hi lorelli, I just read your post. I'm so sorry you have this too but it makes me think from talking to a few people online but it's more common than we think. The fact that you managed to go a little is a good sign or at least that's what I'm telling myself.

I agree  it's incredibly painful, after I went to hospital yesterday morning in pain 1000 mls came out within 2 hours.

Have they told you what they think is causing it?

A catheter in the abdomen sounds very drastic to me. How long are they giving you to get back to normal before they decide to proceed with that?

Try and stay positive if you can, we can cheer each other along until we get sorted xx

I totally agree with you and think there must be many many women who do not come forward with their stories but I think it is very important to do so.

I have never been so happy as I was yesterday when after some hours I was able to go to the toilet without the catheter albeit hardly anything came out.  I kind of knew there was going to be a problem as had drunk so much water (almost 2 litres) that could not understand where it had gone and the little bit of urine I did pass was when I didnt really have much of an urge to go either.  Thank goodness I asked the doctor before I left what to do should I encounter any problems through the night without the catheter which is exactly what happened a few hours later where I was quite literally doubled over in the worst pain I have ever endured.  I dont even know how I got to the hospital as the excrutiating pain was so intense.  Once the nurses put the catheter in and drained all the fluid (about 750ml) in the end I think the relief came so I completely understand how you must have felt too with 1000mls coming out... Was that once they put a catheter in or did you manage to pass that amount yourself?

The catheter they are thinking of fitting is a suprapubic catheter and I dont know much about it but as I understand it also feeds to the bladder and can be switched on or off so that if you want to try and go alone you can and if not you can switch it so that you can use the catheter.

They have told me that urinary retention and not being able to go after surgery is fairly common (around 30% to 40% of women have this problem) but too be honest I dont even know what to listen to anymore as have been told and read so many conflicting things. They say that due to the bruising and swelling the bladder "goes to sleep" and I was so happy it has come back a little yesterday but now I fear that I am back to square 1 again and am worried it wont work properly.

No woman can possibly describe how frightening it is not to be able to go to the toilet alone it is just awful.

If I can help you in any way let me know.

I am sorry that my post sounds so negative but I am really feeling it at the moment and have spent much of the last 2.5 weeks in floods of tears.

thank you for listening xx

Hi - yes it was the same situation as you I went home with no catheter in but had self catheters except I couldn't manage to get them in it hurt so much and nothing was coming out. I managed to dribble bits all night and tried not to drink much but was so thirsty. I was crying hysterically from the pain of being full and the fear that I was trapped at home with no way of going to the toilet. I managed at 5 am to empty with the self catheter but 40 mins later I was desperate again and in pain I think the infection had kicked in then. I went to hosp and about 9am they put a catheter back in.

I spent all night waking up with the urge to go and even to touch my tummy where my bladder is its so sore. I think it must be the infection.

Right now I'm wishing I hadn't had the op but I know when this is sorted I will be glad. I am managing to poo normally now albeit with softeners which is such a relief and I no longer have a massive gaping vagina!

Half the battle is not getting depressed but that's easier said than done when you're stuck at home with a pee bag!

It won't be like this forever I'm sure of it. Keep posting and we can help eachother x

so sorry you went through that too. they were thinking of giving me those self cats to do myself at home but I wad completely against it incase like you it didn't work and in the end once they sent me home without the catheter I ended up in a crisis anyway as had the urge and couldn't and like you was beyond hysterical in fact I had never experienced a level of pain like it.

do you still have the catheter in? even with it in I have constant pain over the bladder bug the pain is nothing compared to how I was on Thursday evening.

on Thursday my urine was dark yellow so they sent anther sample to the lab to check for infection but now urine much lighter agaim and at times dilute.

I hope we can both look back on this time once we are feeling stronger as stepping stones but think we have been a little unlucky so far. am dreading the hospitAl tomorrow to be honest and hope things will get better.

I am still bleeding too..

xx

Yes I still have cath in until next week then another trial. I had brown urine full of white sediment by time it was drained at hospital probably infection.

I am not bleeding now just really wierd discharge but I'm expecting a period in the next week or so, which I am not looking forward to!

I hope all goes well tomorrow, try to be calm that will help somewhat I will be thinking of you.

Keep me posted xx

I have had catheter in now for 18 days with exception of the few hours it has been taken out while they did the twoc tomorrow I am not entirely sure what will happen I assume they will remove catheter and leave me all day to see how things go and if they need to can put catheter in again to drain fluid if I reach that level of pain again. I won't feel comfortable coming home without catheter as coukd nof go through what I went through on Thursday night again so maybe they will send me back with same carheter if try to fit the other one whilst under sedation. I dread it all not only is it painful but degrading too.

I hope your next trial will go well for you. when will you next go to the hospital? are you in the UK?

will keep you posted for sure and as we are going through pretty similar stuff we can try to help each other. right now I am back in bed with a hot water bottle xx

are you in bed all the time? I don't really know what to do with myself I don't feel like going downstairs and hate dragging this bag around. I don't really have any motivation or energy in not sure if that's because I've had surgery and I'm not recovered or depressed probably a bit of both?

Yes it's so degrading and makes you feel so vulnerable. My poor husband had to hold the mirror and torch while I squatted on the floor trying to get the cath in, not going to do much for our sex life!

My trial is next Weds I am in the UK, are you too? How old are you?

Has the pain from the stitches eased for you? X

have pretty much been in bed in the last 2.5 weeks. if I get up it is just to walk up and down the flat and sometimes go into the lounge for few hours or to the kitchen and cook for an hour but when I do I feel utterly exhausted.

Like you I have that horrid dragging feeling with the bag aswell which does not help any. I also have had what can only be described as a"constant pressure feeling over the vaginal area" since the catheter has been in and for the first two weeks I had much pain and soreness by the area where the catheta fed into the vagina and when I moved position I was in terrible pain with that. You are not on your own with no energy or motivation and I can promise you I feel exactly the same.

To have this done and the countless things I have had done in the last three years has been painful intrusive and degrading and there can be no doubt that this all contributes to a loss of confidence as a woman.

You poor thing with having to try and get the catheter in with the assistance of your husband.  Am sure he is more than happy to help you in your hour of need but can only imagine how upsetting that in itself must have been for you.

I am 42 and single and so have had to rely alot on my poor parents who have been by my side all the way. On thursday night when I was quite literally in the worst pain I have even been in my poor mum was beside herself and crying to see me like that.  That pain for me was as great as the physical pain... all in all just terrible

Yes I am in the UK too.  Are you receiving NHS care with all this or private??

I hope things will be better for you next wednesday. Will next wedneday be your first twoc or your second. 

Because I have also been bleeding on and off since surgery it is very difficult for me to tell what is going on re stitches but in the last 4 days soreness is very slightly easier although I still have that bruised feeling in the bottom area and cannot sit in any one position for very long.  I ams till bleeding too and not sure if this is a period or not.  I will try to ask everything at the hospital tomorrow but am dreading that experience too as the hospital when I was admitted were short staffed and the nurses had about 20 seconds to speak to me.

all in all I wish I could wave a magic wand and take these problems away for both of us.

xxx

lorelli I have read your post with tears in my eyes but the last part not only upset me but made me angry. Nurses who only give 20 seconds of their time? As a nurse for more years than I care to mention I feel as though you're being let down. It doesn't matter how short staffed they are you shouldn't even know that. It certainly didn't happen on my ward every patient was made to feel as though they were the only one who mattered. You are having the most awful time but you are listening to your body and resting. I hope you have pain relief to take as well because if you're in pain it affects your recovery. Things will get better although I realise at the moment as far as you're concerned there's no end to it all. Please take care and keep in touch.

What can I say my dear... if only I had been a patient on your ward...

I have endured a very complex medical history having had a tumour in my head removed in 1998 (I am only 42 now) and have utilised the health services both private and NHS for many many years. 

This experience has been a total let down for me with exception of the consultant who I researched myself who I believe to be excellent but you will know more than most that when a patient goes in for such intrusive surgery or any other surgery for that matter they are very distressed and anxious.  The service extended to me did not aid my angst in any shape or form infact made me feel much worse.

The problem always comes down to one thing sadly and that is money!  The senior nurses (who believe me are few and far between) are so rushed off their feet that as they come into assist you when you ring your bell they are more often than not being called my another nurse outside about a different patient and so immediately they attention and focus is on something else. they simply have no time and it can only come down to management and lack of resource.

In the 4 days I was in hospital I can recall only one nurse taking the time to speak for me to 10 mins as I was literally flooded in tears due to the pain I was experiencing.  I never saw that nurse again.  I felt like a number not a patient and there was a lovely lady in the room behind me at the hospital who had also had major surgery who felt the same.

I can never recall healthcare being like this.

I can only at this stage hope and pray things will improve.

I have been told so many conflicting things that quite frankly I feel terribly confused and upset with it all.

I think it i can get my bladder working semi normally again it will help my recovery a great deal but never want to be in a position where I am in the amount of pain that I was on thursday evening so will have to make sure I am not at home without the means of a catheter until I am 90% certain that bladder will work on its own which I realise may take time.

I am truly grateful for this forum infact I spoke to three other patients in my doctors waiting room the other day who are also differing and told them all about this forum.

There can be no doubt that this site provides more information on what may happen/what will happen than any doctor ever could.

thank you for your kind words.

Hopefully I will have a happier post to send in soon

I agree with you that things have changed so much in the NHS. I am now retired but do a lot of consultancy work and investigating complaints because of my previous experience and as you know I'm very active on this website. I truly hope things improve for you very soon. 

Yes I can see how active you are on this website and how many people you are helping and all I can say is that people like me are truly grateful and appreciative of your help and input. 

I am afraid it is not just the NHS which has problems. I can assure you that the private health sector has alot to answer for but whilst in my very fragile state I am trying to think too much about that right now in the hope I can get better and feel stronger.

Hopefully I can post something much more positive sometime soon

with my thanks

Lorelli - I'm thinking of you today, I hope it works out, please keep us posted.

It sounds like you've been through a really tough time with all your health problems and bring let down by the NHS. I went private for my op, fortunately I have private insurance with my job. I had such an awful previous experience with my local Nhs hospital which is why I ended up needing the repairs that there was no way I could go back there for this.

I hope you will have better care today and it will restore your faith, I know it isn't all bad with the NHS as you can see with wonderful people like Matron.

xx

by the way my dear I forgot to mention that I had my surgery done through private aswell.  I am sorry you were previously let down by the NHS but I can promise you, the service I have had through the private health sector with all this in the last three months has been something I could never have imagined. I could quite literally write a novel about my experience but basically it comes down to under staffing and insufficient resource in place which for private healthcare I find alarming.

I was waiting for my scan last week and a lovely 72 year old lady was sitting next to me telling me how disgusted she was with the private healthcare too.  She had suffered pneumonia an had been given a young nurse from an agency who firstly took her into a freezing cold shower and left her there by mistake then another nurse took her into another shower and there was a power cut and she had been left standing in the shower in the pitch black.

I certainly have seen things from a different light this time.

The list is endless.. It has upset me to no end and coupled with the intense pain and discomfort I am battling I have no clue as to how I have gotten through thus far.  Hope things better for you now x

Sorry I haven't responded sooner, I haven't been able to log in.

how are you doing now? 

I wanted to give you some encouragement and confirm that I don't have a catheter now and was able to get rid after 2 weeks. It's still taken another two weeks for my bladder to feel like it's getting back to normal and it's still not perfect but it will happen for you.

im sure part of my problem was one or more infections and a really irritated urethra.

I found I could only pee standing up to start with so that my be worth a try for your next twoc?

i hope you have some progress soon X

I've been thinking of Lorelli too and hoping she's improving well.

Thank you for your note. I am SO pleased to hear you managed to rid the catheter and that your bladder has resumed function,

Unfortunately my problems persist and 5.5 weeks on I still have the catheter. My next twoc is next tuesday and I am dreading that.  Even if they are able to remove the catheter and let me home again and I experience problems later on with voiding and get into that unbearable pain again I am worried I will need to rush back to the hospital and likewise am anxious incause the twoc does not go well and they have to insert another catheter for three weeks. I never in a million years thought I would experience this problem. I knew that I may need a catheter but it was not communicated to me that it may be for this period of time. 

I am sure my urethra is sore and irrtated too as I still have burning and a cutting pain where the tube fits in and logically assume that having had so many catheters in and our over the past 5.5 weeks has not been particulary good in allowing the area which was operated on to heal so I am very sore,  The aftercare remains null and void which pains me even more.  I am hardly sleeping because of all this and am now waiting to hear back to see if they located whether I have an infection or not contributing to the burning and soreness as I am unsure whether this is normal after this amount of time.

Thank you for the tip re standing and trying to wee at next twoc. I will definitely give it a go.

I am feeling so terribly low and right now I maintain that I wish upon a star I had never gone ahead with this surgery.  I am sure that my thought process will change in time when hopefully things are better but right now I am so sore that I am housebound either on the sofa or in bed.

Thank you again for getting back to me. I am SO pleased you feel better.. this does allow me hope xxx

thank you kindly for touching base.  I am still in pain and suffering and the catheter is still in. I just replied to ellies post so hopefully you will be able to read that.

fingers crossed things can improve sometime soon. I am ever hopeful

Yes, Lorelli, just seen your reply to Ellie too.  I'm so sorry this is going on and on for you.  It seems so unfair.  I'm very much hoping next Tuesday will go well for you and you come back with some good news then! 

thank you kindly. I am unsure how much longer I can go on in this pain and discomfort.  I never imagined anything like this.  Suffice to say I seem to have been one of the unlucky ones. I hope to be able to post something a little more positive sometime soon

I am concerned about you.  Do you have anyone around to help you?

thank you my dear. I do . I am lucky to have my dear parents very close by who have quite literally been by my side in last 6 weeks. 

I hope things will get a little better and that the person with whom I am in the care of will have the common decenct to get back to me re whether I need antibiotics or something or whether there is an infection showing.  Having no aftercare with these complications has made things 100 times worse. I remain stunned this level of care could possibly be linked with private healthcare

I'm so pleased to hear you've got your parents nearby:-)  Yes, I'm horrified at the level of care you've had too.  There is a lot of criticism with the NHS but I really couldn't fault my care with them and the local GP's were so good when I developed a bladder infection soon after, sending a doctor round to me.  Because I'd had cancer (that was why they did the hysterectomy) I had access to a cancer nurse if I wanted to ask anything at any time, and that was so useful too.  So I hope your person will get back to you with advice!

I have most definitely caught the short straw with all this and have never received care like it. I have the most fantastic GP but he cannot do much now I am in the care of the uro-gynae.  So pleased you had good care. I am literally at my witts end and so sore today that been in tears again today. I could write a novel about all the failings within phealthcase but will save that until later as right now I just want to feel stronger.

That is just so awful.  It just adds insult to injury that your GP can't step in because you're in the care of the urogynie who aren't doing their part!  All I can say is rest and eat and drink what takes your fancy, and try and pass the days in the best way you can, and hang in there in the hope that tomorrow will be SO much better.  I'm hoping you've got painkillers, at least?  If what you've got isn't working for you, then perhaps your GP can help there, or if not, your pharmacy?  Honestly, I feel so frustrated for you!  But know that we are thinking of you.

thank you again for such kind words. 

This is the most horrendous thing I have ever endured and not having aftercare has made things so much worse I honestly cannot believe it.

I am trying as best as I can to cope with the pain which today has been particularly bad.  If I sit tight in the same position it is very slightly better but as soon as I move or walk, that awful cutting pain sets in and is so very painful bringing me to tears.  I have taken painkillers but in all honesty they arent doing much. Hope tomorrow will be a little better.

my GP is truly wonderful but in his capacity as GP he cannot do too much and will refer me back to the specialist I think at this stage.

thank you again xx

If you are having no luck with your consultant have you thought of complaining direct to the private hospital? They will have a complaint policy and should be very keen to make sure you are satisfied with your care. It's horrible that you have to complain but it's really not right if you are not getting the care you need.

are you on antibiotics? If not then can you get some from your gp, in case some of the pain is down to the infection?

you would not believe the service I have had from the specialist !  I am too upset to even go into it in detail but will try to private message you about it when I get a mo..

A sorry state of affairs by all counts.

Please do. I'm sorry it's been so crap for you. x