Liver cysts

Hi I'm just over a week of having 35% of my liver removed plus my gall bladder due to liver cysts.

Still in pain a lot, one bile tube still leaking which pulls on my skin on contact

Unable to sleep, deep pain on right side. Back ache

Struggling to cope

Ps very new here to the system. Not sure of what I'm doing.

Any one had similar or able to offer advice

16 Replies

  • Gosh, you are going through the mill 😯

    You have been so brave. I hope people on here have some experience to share with you. Unfortunately, I don't have experience of a Liver operation 💚

    I wish you well on your recovery .

    Take care 🍀

  • Sorry, I meant 'fortunately ' !!! 😀

  • Sounds like you have had major surgery. Not heard of people needing a resection due to cysts, but there you go.

    Was this keyhole surgery (I assume not) or do you have a major abdominal incision?

    I found after keyhole resection it was a few weeks before i could move from sleeping sitting propped up on my sofa to being able to lie down in a bed.

    I would suggest you contact your GP for advice as to adequate pain relief while your wounds heal, remember you will have been pushed and pulled and tugged and had your internal organs shoved around and bruised, it will take a lot longer than a week to get comfortable again.

    Do you have any district nurses or similar you can contact about the bile leak - do you mean you have a drain still, or is the incision leaking?

  • Hi Bolly I had major surgery on the 25 May. 35% of my liver removed and my gall bladder. In hospital for a week. Then sent home I'm supposed to see a nurse every day but twice now no one has shown. Lying on my back is painful as I feel it tugs, lying on my sides are near impossible. The bile leak is being drained through tubes on either side of my body. I go back to hospital Tuesday to hopefully have these removed. When discharged I was given no advice, no leaflets nothing. Just pretty much left to myself.

    I'm so tired, so emotional. My epidural was infected and now I'm pretty sure I have the symptoms of an infection caused by the catheter too 😰

  • I do know what you mean about the bile drain, I've just had op to remove gallstone and bladder, they were able to get gall stone out in pieces but not gall bladder. Apparently for some reason my gall bladder is attached to my liver and omentum and my duodenum is also attached to my liver. So I came around in the ward to my consultant crouched down next to me apologising because he could not remove it, saying it was the worst gall bladder he'd seen in years, so much scar tissue as well. As I had never had op on my stomach don't know where scar tissue came from, one of my first questions when I go to outpatients to hopefully have bile drain removed .After almost 3 weeks it's not so painful to sleep with however still have pain when I yawn or deep breathe.

  • scar tissue comes also from repeated infections, i have the same problem gallbladder stuck to my liver. and also shrunk to the size of a thimble. all due to infection as stone has been in bile duct for months. they tried to get my stone out with and ERCP but its so calcifed they could not remove it, also 1/4 of my liver is also shrunk and atrophied, all due to infection of the stone being in the bile duct. im waiting for the operation and feel so ill and had saw this post by melodymermaid but felt to ill to reply yesterday.i still dont feel well at all and have been in bed. im so glad to have read your post about the gallbladder being stuck to your liver. im sad for you but its always good to find someone in the same cirucmstances. as we can talk to each other. did you feel very ill before you had the gallstone removed. was the gallstone in your bile duct. i feel i have been neglected by the hosptal as i went in early may and they could not find the gall stone and gave me the news that about gallbladder and liver. consultant also took pic of my liver with his phone and looked very pleased with himself when he showed it to me. obviosly it meant nothing to me as i dont look at livers ever day. im so upset with them and dont trust them now.

  • Hi Grace

    I never actually had any problems at all with my gallbladder. Mine was all down to liver cysts. But was told that the gallbladder had to be removed to get to the liver. How long have you been waiting for your op?

    My hubby rang the dr or the consultant secretary almost every other day. Just telling then how much I was in. ( I wasn't due for surgery until around end of August/September however did in get in sooner thanks to him. Lucky I did. When I came round the following day after surgery my surgeon told me that due to the extant of damage. I wouldn't have made it another week!

  • thanks for letting me know that. how are you feeling now? i do hope that you are feeling better. thank god your husband rang the consultant it does not bear thinking about does it. sending you hugs and good wishes im glad that you have your husband with you he seems a god send, xoxoxo

  • Hi Grace, I have been suffering from nausea and occasional vomiting for years, my old doctor sent me for loads of tests and before the results came back he had left the practice. So when I went back for my results I saw one of the other doctors who said that I had a gallstone, but they did not think that was causing the nausea and vomiting and as it didn't appear to be bothering me they wouldn't do anything about it. that was a good few years ago, after my doctor had left I decided it was time to change to a closer practise, which I did. Ialso have underactive thyroid and developed lots of allergies and sensitivities, I started to feel unwell a couple of tears ago, early morning nausea and tiredness, last year my bloods showed something wrong with my liver function and having a fatty liver was told to stop drinking, they didn't appear to believe me when I told them that I rarely drank, but we are almost teetotal in our family.Then last September I just could not stop vomiting, eventually my doc came out an gave me an injection. two weeks later I was back in surgery with the most excruciating pain, and he said straight away gall bladder, I had an emergency scan 2 days later then had to wait to just before xmas for outpatient appt. by then I was barely eating and had lost 2 stone in weight, surgeon said that wasn't symptoms of gall bladder so had to have a CT scan and an MRCP, both were done in January and I had to wait till 14th May for my op, I kept ringing the secretary and telling her how ill I felt but what with the strikes and surgeon being on holiday I felt neglected but once in had the best treatment although was in 4 days instead of being a daycase. now my sister has even noticed how well I'm doing and I have energy again it's wonderful just the bag, the pain which painkillers take care of an sore ribs, bat finally I feel human again.There is light at the end of the tunnel. Susanxx

  • so when you say you got your op does that mean that they took out your gallbladder? as i am so ill every day,i found out i had a stone in july 2015 then went into hospital to have it removed on april 11th 2016 thats when they did the laparoscope and found my gallbladder shrunk to size of thimble and 1/4 of liver atrophined and shrived. they could not find the stone at that time. ( yes it was in the bile duct) so i got an appointment for MRI CT scan 3 weeks later. and they saw the stone in the bile duct. and sent me an appointment for 7th june.thats on tuesday coming, they sent that before they had the results of the MRI CT scan, however i ended up getting taken into the hopsital on 11th may 2016 in an emergency with near blood poisoning and agonising pain, thats when they did the ERCP thats putting the tube down the throat and putting wires into the tube and trying to dislodge the stone, which they could not do, they spent an hour trying to dislodge the stone, they eventually put a stent in. they said i would be sedated and would not remember much i can assure you i was wide awake through the whole agonising procedure. i did feel better at first when i got the stent and i heard the doctor who put the stent in say "look at all the pus coming out of the bile duct!" i also got pancreatitis which is one of the things that can happen because of this procedure. my next operation is to cut the bile duct remove the stone and reconstruct the bile duct. it said on my discharge papers that i had (suggestive of mirrizis syndrome) i have been in a lot of pain the last few days worse than usual. i have just read your post again and it seems you are saying that you did get your gallbladder out. forgive me im full of pain killers. i feel so unhappy i have been ill for so long and i feel so terrible for you to as they said you had a gallstone but your sympotoms did not match gallbladder problems. well i know they do as i get cyclizing for sickness and have also lost over 2 stone, my ribs and stomach and back are aching, i also have chronic liver disease as had hep c and hep b. im 65 now had hep b when 21. so thats a long time ago, i got no treatement for that but got treatment for the hepc and cleared the virus i cant remember exactly when but it must be 9 years ago maybe more. as when on the hep c treatment i started to hallucinate and other things and ended up in the mental hospital and put on olanzapine anti psychotics and they have wiped a lot of my memory out. i put on 5 stone. i have been of them since 4th january this year. it took me nearly two years of cutting down and the horrors to get of them, the fear i suffered and the suicidal feelings were horrendous, many people can never get of the anti psychotics because of this. i will never forget that ordeal, i am very wary of all drugs now especially anit depressants and infact any drug. i got omeprazole as one one the daily drugs for gallstone and the side effect are worse than the symptoms the drugs are given for and also they interact with about 400 other medicines. i am feeling so down as i am bad tempered and i seldom get out the house most days i just watch tv. i do try to do a bit of walking however the last week has been so bad and i suppose i am feeling very sorry for least you have given me some hope. and when i read a lot of the posts on here and see the bravery of the people and how they all stick together and help and support each other i am so glad i found this forum. thanks for replying to me it does mean the world and has given me hope, xoxoxo

  • Hi Grace, no they cannot take the gall bladder out, but have assured me that it will just shrivel up, the gallstone wasn't in my bile duct it was in the neck of my gall bladder but the scans don't seem to show scar tissue. Am glad you are having op soon, it does make a difference once the stone has gone, hope you feel better soon, let me know how it goes for you.

  • So I came around in the ward to my consultant crouched down next to me apologising because he could not remove it, saying it was the worst gall bladder he'd seen in years, so much scar tissue as well. As I had never had op on my stomach don't know where scar tissue came from,

    this is part of your post susan where you said there was so much scar tissue or am i getting mixed up again,

  • I think you may be but I did say that,and then you sent me a reply saying that infections can cause scar tissue

  • i have just read your other post to melodymermaid im sorry for getting mixed up i see you did have the stone removed. did you have your bladder removed. all those parts of your internal organs that are stuck together are due to infection as when you first went to the doctor they saw you had a gallstone and he said that was not what was causing your symptoms. well it was and thats why your all stuck together. scar tissue is another word for adhesions and thats what you have got, just like me only its only my gallbladder that is stuck to my liver but its all shriveld up and so is part of my liver and thats caused by repeated infections,. all that time that you were feeling ill you were infected by that gallstone which they said was not causing your pain, and because of the infections that you have had for years that they said was not the gallstone. it was, and thats the problem. like me you have been neglected. im sorry but i know thats true. im not a doctor but i had a similar condition somewhere else in my body and because i would not let them give me a hysterectomy all my insides were stuck together. my womb and ovaries were stuck to my bowel and it was my own fault as they wanted to give me a hysterectomy but i would not let them.that was 24 years ago that i finally gave in after suffering terrible pain, no wonder the surgeon was crouched down apologising as you have been neglected. you complained about this years ago and they said no, its not gallstones and it was, anyway susan im glad that your feeling better. but i for one will be putting in a complaint after i get the operation, not before, as i have been neglected.

  • You've seen no one? No nurse? The hospital is supposed to set that up through yr surgery, or they also send a letter to them! That's not good, I think. And I agree with Bolly, get the right pain relief, you poor thing. What they do when they do surgery can be order to get TO the actual liver they must lift up the entire rib cage...often that is the back pain most common.

    I hope you get the help and answers u need when you go back for your appointment.

    Write a list of every concern query and worry. Go over the list. Tell them your a lone and scared also.

    Let us know how your doing.

    For now? Call your GP and ask about the nurses service, or lack of..explain what's going on. I would not wait on that. The first day they did not show up I would have been on the phone..they need to be checking for infection.

    Cheering you on,


  • where are you in the world. if your in the uk there are places to phone for help. are you on your own, do yo have any support. you should not have been able to leave the hospital without pain relief. when i was in the hospital there was a woman in who had cysts or absess on her liver. she had been in the hospital for a month, unfortunately i never got to know much about her as i was shifted wards 3 times in the 5 days i was in. so i have heard of this.

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