So upset and angry with hospital right now

Hi All,

Sorry my post ain't going to be very positive right now as feel all hope has been taken away. I was diagnosed with endo about 2 years ago now and had a lap to remove what they could but could not get to all of it since then I have had 6 months of zoladex injection then fitted with the coil and now on depo injection along side that and still in great pain which I really don't understand. My issue being is when I had the lap done my bladder stopped working. It did come back but was not emptying probably so been having to self catheter ever since. I have seen a urologist who done tests and can't find a reason for this so referred me to a specialist last July. since then they have lost my referral twice and I have just received a letter saying there is a ban on all new referral due to waiting times and I would need to be 're referred once it is lifted. I have lost all hope that it's going to be sorted and feel so lost and alone anyone else had similar problems and what did they do. I don't have a quality of life it's just an existence. With the pain and the UTI's I'm not sure I can cope with it much longer. Sorry about the long message/rant just need some advice

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9 Replies

  • don't be so hopeless dear, i'm also suffering from endo, taking medicine a whole year, 6 months ago had a laparotomy, but heart pain, nausea, vomiting etc. came back again....

  • I'm so sorry that you're going through such a hard time. I was getting hassle from the hospitals as well. Just the other day my GP asked me to leave his office when I told him he was trying to prescribe a pain killer that I was already on and found it wasn't working.! Ihe also wouldn't refer me Im having to do it myself online and my hospital said that they would likely cancel on me cos they're so busy ATM. I'm in the process of getting a new GP practice. I'm having to go private to get referred due to the way my hospitals being, I' managed to track down an endo specialist in the north east near Newcastle and I've heard he's changed lives for some sufferers. I'm seeing him on Wednesday. I'm praying he can help me. What area do you live in? Cos there's a website you can go on to find endo speciiats and whatnot near you who coul maybe help?

    I rly hope you get through this if ever you need to talk you're more than welcome to message me.

    Lots of love


  • Thanks sorry your having a rough time too. I am near Cambridge

  • Hi Mel84, really feel for you hun. I'm still recovering from a lap that I had on 31st Dec, my 4th or 5th (lost count!!) and every time I've had bladder problems which have thankfully resolved within a day or two. This time I have had ureteric stents fitted which have really caused Me so many problems- feel like I'm chained to the toilet as feel need to go but can't, feels like I've got cystitis when I do go with the pain and can't empty bladder properly. Thankfully, I will be having them removed in a couple of weeks.

    The doctors think the resistance to pee is our brain telling us we don't want to because it might hurt after the op, so it's more psychological than physical, which might be the reason the urologist has not been able to find anything wrong. There is a test that can be done by the specialist, it's called an ivp test to check your kidneys which I have had done myself in the past. Might be worth mentioning this to your gp. You may have to be referred back to your endo specialist for this.

    In the meantime, take plenty of vit c and in the form of a supplement to try n prevent infections, cranberry juice is good (although it is very sweet and I have to dilute it with water) and try to drink plenty of water, which I know might be hard if you're worried about pressure on your bladder. Sorry couldn't help more. Hope you feel better soon xx

  • Sorry your feeling like this

    I say keep on and on at the hospital it's the only way to resolve issues

    Since my op there over 10days ago I've not been able to pass urine normally so have had numerous a&e visits and a catheter to try empty my bladder. Waiting on emergency scan to check it all out along with a scan for a possible dvt

    It's easy to get down about it all but I hope you get sorted very soon and hope the pain eases as it is one of the worse feelings in the world I found. X

  • I am so sorry to hear about what you've been going through. I can absolutely see why you would loose hope. it sounds awful and I can't believe the referral business. That is just so unacceptable. Have you called the ombudsman service for the NHS?

    Because it does sound as though a mistake has been made and if your paperwork fell into the right hands you might get some Sort of redress.

    I know that they are being closed and funding withdrawn in many areas at the moment but it may be worth calling your local citizen's advice bureau. That way, somebody else can take up the full-time job of following up NHS bureaucracy and you can concentrate on supporting yourself.

    I have had similar issues with my surgery loosing results and referrals but nothing quite as serious as what you describe. You really don't have to put up with this and you certainly shouldn't be left in the dark.

    I hope this helps and please don't loose heart.

  • Thanks for your reply I have reported it to PALS so far and waiting for them to get back to me. I am hoping that they will see me after that else I have threatened to take it higher if needed I just don't know how much fight I have left.

  • Hi. I've just left a similar post. I had surgery on December 1st. And since then I've had all kinds of bladder issues. I had a catheter in for 2 weeks as I couldn't pee for myself. When it finally came back I knew I wasn't emptying fully but tried to get on with it. My bladder stopped working again when I got my period and now I'm self catheterising.

    I have no idea how long this is going to go on for. No one seems to have been able to tell me why this is happening. I don't want to do this for the rest of my life. I'm scared that I'll never get better. Some days I wish I'd just stuck with the endo pain.

  • I know how you feel I lost bladder function completely again after being investigated to see if I had a blockage or any reason for the retention. I hate self catheterising every time I think I am getting somewhere it goes all wrong. Hope you get some answers soon

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