Awaiting gallbladder removal.

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Hi all

I've posted on here a couple of times over the past 3 years looking for answers. I've been suffering with right upper quadrant pain which radiates to back and shoulder blade. The pain is 24/7. I'm pretty sure it's gallbladder but sphincter of oddi disfuntion has also been mentioned to me. I just don't know what to do anymore. This pain is ruining my life and driving me into depression. I'm so scared that after they take my gallbladder I'm going to be worse off. I feel like I'm just being left by my gp/hospital ect to self manage. I've done this for 4 years and it's finally broken me. Sorry for sounding erratic and crazy but it's the middle of the night and I'm sat awake in pain knowing I've got to drag myself into work tomorrow pretending I'm okay. I just feel so alone.

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  • Posted

    Have you had tests to show gallstones or a hida scan to show it’s not functioning? I got to that stage pretty quick where I was in constant pain, permanent nausea and was off work with it as physically couldn’t work in that amount of pain. Had mines out 5 months ago now and things haven’t been amazing but I do feel better than I did beforehand. I definitely think it’s a risk worth taking to remove the gallbladder! Yeah there may be side effects but you know you can’t go on the way you are feeling just now. So any improvement I guess would be a bonus? We’re all here to help 😘 xx

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    • Posted

      Thanks for your reply Scottie. My gallbladder has to come out due to a 7mm polyp. I just hope it's the right answer and I get my life back. I'm so unhappy right now.

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  • Posted

    Hi Katie. I feel for you. Did you have an ultrasound taken to determine if it's gallbladder?? I was told I,have 2 large stones and told to go on a low fat diet. Doing that, but lost weight. I am a thin person to begin with. I saw a surgeon and he said surgery wasn't needed. After last attack, I decided to have surgery. When i received the paperwork, it scared me. Now I have decided to go for another ultrasound and put off surgery. Don't rush into surgery unless all steps are taken first. I wish you good luck.

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    • Posted

      I too am a thin person and have been following a low fat diet to try and control the pain. I lost way to much weight and am now eating a lot of high calorie low fat foods in hope of regaining some weight before my op. Any kind of eating seems to cause me pain.
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  • Posted

    Hi

    Thanks for your prompt replies. Comforting to know I'm not the only one awake in the middle of the night! I've had several scans on my gb. I have a 7mm ployp in it which is why it's being removed. My consultant has been monitoring it's growth but has always said he doesn't think it's the cause of pain. I've asked about hida scan but was told there is a strict criteria as to who can have one. I very much doubt I will get one if I'm not on the waiting list for removal. I've been waiting since November.

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  • Posted

    Katie

    you poor lady , bless you.

    i had the same journey as you for over 3 years Katie but my pain attacks were very significant as in going anywhere let alone to work was not an option,I also lost 4 and half stone due to being too scared to eat, I really do feel yr pain.

    yours is a bit different though in as much as they don’t seem to be able to find any stones ,which is an added worry as in you really don’t know what’s wrong, and yes that’s extremely scary to live with.

    have you had an MRCP which is an mri scan ?

    if not please go and keep driving yr gp crazy until they give you that scan , as it looks at the boilers tree 🌲 

    PRESS FOR THAT TEST IF YOUVE NOT HAD IT KATIE !

    ALSO ,theirs another test Katie , Called an ERCP , where they do an endoscopy.

    which can determine wheather you have spinkter of oddly disfuntion or not , so ask your consultant, why you’ve been given that test , and request it , as you need answers and fast.

    you do I beleave still however , need yr gallbladder removed because of the polyip ,as at 7mm you are nearing the risk of gallbladder cancer in the future not now so do not panic , at 10 mm it becomes a real risk ok.

    you need more tests you need answers and it’s yr right to have these tests performed so drive them sick f****** at the 

    n.    No

    h.    Hope

    s.    Service 

    ‘mad until you get them, as if you do not push they will not test Katie. If they save a pound at the cost of yr life they have a heaved their goal as you ,we don’t matter anymore !! Saving a pound does be leave me I know it dear.

    what your going through is very painful and very scary , possibly very dangerous, you don’t know , as you do not have enough answers ,

    ‘and yes it will destroy you totally Katie. Mentally, physically, and emotionally, 100 per cent for sure as it did me !!

    they left me , the same as you Katie , for 3 years and no one and I mean no one gave a hoot if I lived ,died or went crazy !!

    in fact !! They tried very hard to convince me I was crazy and damn near succeeded!!

    and trying to get me on anti depressants and telling me I had cancer phobia etc the sick b******* that I have now come to learn that they all are.

    katie they literally left me for dead 💀 literally in the end and all they had to offer me was morphine of which I repeatedly refused point blank !!

    i ended up in as good as emergency private surgery with hours to live my surgeon said !!

    ide had a 2.2 cm stone stuck lodged in the cystic duct , gallbladder neck , for 3 years , so 90 percent of bile could not enter nor leave my gallbladder, it then as it turns out became infected , then gangrenous and full of puss , I was extremely ill and in enough pain to kill any man beleave me !!

    and the nhs answer to this at various a and e departments !!

    would you like some morphine !!!

    my own gp even refused to give me a private referral for a ct scan , when I produced my own private evidence of what my condition was , when I was insisting I be sent to hospital and put on intravenous antibiotics and fluids with Nill by mouth to reduce the inflammation in my gallbladder and bring the infected gallbladder under control AS THIS WAS NICE GUIDLINES FOR MY CONDITION !!

    REFUSED BY MY GP AND VARIOUS A AND E DEPARTMENTS ????

    and this is when I had my own private evidence of my condition by this stage Katie !!!

    now then I did start to think I was crazy !!

    if it weren’t for my better half ,pushing me and telling me ,no no hun yr not mad ,your condition is real ,don’t listen to them, ide be dead now 100 per cent for sure !!!

    i got my private ct scan at Harley st I was told as I left with my cd disk to find a surgeon now this instant !

    ide had a consortation with one in Harley st 3 months prior, I dropped the disk to his secretary , left , was driving back home to Windsor in agony, when he called me and said , I’m doing a liver transplant as we speak,  you need to get yourself to the prices grace hospital immediately, as you have only hours to live ?

    i do not know how you are driving or alive to be honest , your gallbladder has ruptured ?

    and I believe it’s gangrene, please get to me so I can save yr life ?

    i drove to that hospital, he put his liver transplant on ice as I arrived!!

    it was 6:30pm I went under immediately woke at 7:50pm to be told completely gangrene, ruptured,

    ect ect I’ll spare you the gory bits .

    and my god you are one very very strong man and so lucy to be alive !!

    i went home at 11am the following morning , I never took a single pain killer before or after the opp !

    im 5 months post opp now and I’m doing just dandy !!

    my new job is suing the n h s death squad and I will not give up until they are held accountable for attempted manslaughter and trying to releave my 5 year old son of his dad to save a pound !!

    i also will never pay tax again in this country nor National insurance out of princeapal and ide rather die or go to prison than pay it ever again !!!

    thats my story Katie or the best part of it !!!

    please do not sit on yr hands !!!!!!

     

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  • Posted

    Katie 

    ‘please do not sit on yr hands over this .

    you must be proactive and find your cause !!

    ive only wrote all this above as you say you are finally broken ok

    no you are not !!

    you are a strong woman , you have people family who love need you depend on you !!

    you are UNBREAKABLE KATIE !!

    you get up you go fight for your right Katie , your right to your nhs healthcare . And you go save your own life .

    i don’t want to read another story about another person died at the hands of our murderous nhs as it seems over this condition because it’s a hard one for them to diagnose sometimes which I know it is !!

    you get up you go fight you can and you will get diagnosed and the treatment you need and deserve.

    please do not give up that’s just too easy Katie !!

    if you need any help with the nhs me and my mrs will help you and we will if you want our help please let us know ok ??

    YOU CAN DO THIS YOU CAN GET THROUGH THIS AND YOU WILL !!

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    • Posted

      Gosh that's an horrendous thing for you to have gone through. How on earth did they miss a stone that big?. Thank goodness you manage to get yourself sorted. I do wonder what state my gallbladder is actually in. I know that only the polyp shows up but an ultrasound does pick up everything I'm told.

      I am very worried but I'm also a bit of push over and I'm not very assertive. I suppose I'm putting my trust in what the experts are saying to me and whenever I'm asked by medical professionals which consultant is looking after my gallbladder They all say hes the absolute best and i have nothing to worry about.

      The pain and worry has destroyed me. 3 yrs ago I was happy, outgoing and confident. I miss being that person so much. My gp thinks I'm depressed with unresolved bereavement issues. I'm now on a 4 month waiting list for counselling. I've had a fair few different tests but none of the ones you mention. I know my gallbladder needs to come out. I'm awhere of the cancer risk and I definitely don't want to take my chances with that.

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    • Posted

      Katie

      the Stone was not missed, I was told I had 4 stones then Tod 5 then Tod 7 then told 2 lol

      ultrasound is very good but they do not always pick up the smaller stones Katie !

      they also do not pick up infections in the gallbladder very well at all !

      they certainly do not pick up gangrenous gallbladder at all !

      now if your consultant is supposed to be so wonderful !!

      and this is not to disrespect him by any means Katie.

      but talk is cheap ,and that’s simply not good enough when it comes to the possibility of a persons life being at risk .

      if they have not found stones in yr gallbladder ,yet you have been in so much pain for 3 years and it’s likely connected to your gallbladder which it is by yr terrible symptoms and I agree it is likely to be gallbladder connected.

      and you are suffering to the degree you are Katie and it’s ruining your life yr well-being and yr mental health ,which by the way is extremely common with this evil condition,which is like having someone walking behind you with a loaded gun pointed at the back of yr head ,hinting at you that they are going to blow yr brains out when their ready but you just don’t know when ?

      thats how I described my feelings and how I felt and how can a person live like this on a daily basis 24 hours a day every day and not become mentally unwell , it’s simple impossible really to be frank.

      the fear involved with that evil condition is torture on an unprecedented level , so can can that be right to leave a person in that state !!!

      i just isn’t right, full stop.

      now if your consultant is said to be so wonderful and I quote (said) to be then he should have taken his investigation way way further given your case and you symptoms he should have sent you for a mrcp scan to look at yr bilery tree to rule out a lodged stone in yr common bile duct as a ultrasound will miss this !!

      he then should have had you had a cat scan of yr upper abdomen and pelvis to check everywhere else and If still no stones or other bilery ,liver ,pancreatic, or digestive evidence was found then he should have had you had an ercp just to be sure , then he would in my opinion, be a good consultant ?

      given yr pain level and the duration you had this and the toll it has taken on your mental health and well being , those are the gold standard of tests Katie.

      as a polyp will not cause you to have these symptoms nor this pain .

      so I urge you as you have made clear to me that you are not a pushy person .

      to print this opinion of mine off , and take it to this so called best of the best consistent !

      and let him read it , and ask him what tests he is now going to order for you !!

      becouse I have just stated what he knows is the gold standard protercall for your=r servers symptoms.

      were here for you should you need any help or advise .

      do not wait any longer Katie 4 years of suffering to the level you have described is about as stron an indicator that something is very wrong as you can get !!

      please take heed of my very thoughtful advise here given yr symptoms and be proactive Katie !!!!!!

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  • Posted

    Have you had scan that has revealed gallstones or are you just guessing it is gallbladder problem? It is unlikely they will remove your gallbladder unless you definitely have gallstones.

    What kind of work do you do.? If you have your gallbladder removed you will not be able to life anything heavy for a while so that may determine when you can go back to work. You should not have to pretend you are OK.

    As far as diet is concerned stay off anything fatty, it is extremely difficult to stick to a completely no fat diet but as little fat as possible.

    Take care and keep in touch

    Sarah

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    • Posted

      I have 7mm gallbladder polyp that has been monitored for 3 years. My consultant wants to remove my gallbladder because the polyp has grown over the past 3 years. I feel its gallbladder related because of the pain I experience. I think eating aggravates it more and it's got progressively worse over the past 3 years. No stones have ever shown up on ultrasound but sometimes I wonder if my gallbladder might not be working right.

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  • Posted

    Hi Katie, you're not alone by any means. I was the same as you and they mentioned to me also that I might have sphincter of oddi dysfunction. In the meantime they found that my gallbladder wasn't working properly so I had that removed first to see what pain is left if any. Unfortunately after surgery the pain as you described started again. A month after surgery I had an appointment with the surgeon and as I was still starting to get this pain all the time he said he would refer me back to the gastro clinic but to also he suggested to me to go through my gp and get them to refer me to the pain clinic.

    The pain as you know gets worse and as I'm right handed any movements aggravate the pain and it gets so much worse. As I wasn't to have a gastro appointment for several months I decided to pay for a private appointment which I'm so glad I did. He examined me and said he didn't think my symptoms were due to sphincter of oddi dysfunction but to another condition call abdominal wall nerve entrapment, its all related to basically the muscles that form the 6 pack in your abdo. Because the nerves turn a 90degree angle for some reason they get trapped. He did what is called a Carnett's sign which was negative at this point as there are various areas from under the ribs to the lower abdo where the pain originates from. I can go straight to it now. He also suggested the pain clinic and to show the doctor there the letter he was to write.

    I had the pain clinic appointment about 8 weeks after my doctor referred me, he did the carnett's sign test on me again and he knew exactly where to press as it was excruciating in the places that were tender. Doctors often miss this diagnosis and there's not loads on the internet about it.

    My doctor did a nerve block procedure a month later which decreased the pain by about half which was a great relief, unfortunately they don't know how long it will last so I'm waiting now for my appointment next week to have this procedure again and hopefully it'll last longer. 

    I had to have my gallbladder out first as I couldn't eat much without being sick and at least now I can eat normally again but I have this constant pain that is always worse in the evenings and if I've been quite active.

    Yes I know what its like to be sat up in the middle of the night in pain because its keeping you awake. Have your gallbladder removal first and then see what pain comes back afterwards, it may not. There is a treatment for this but it is trial and error but sphincter of oddi dysfunction is awful and you really don't want that. Not all doctors think of this first but its worth keeping it in mind after your surgery if you're still suffering.

    Keep in touch and let me know how everything goes.

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    • Posted

      Thank you for your reply Katherine. I have been seen by the pain clinic and I had some trigger point injections into my abdominal muscles to see if it made any difference. It didn't. That was July last year. In the October I had a follow up appointment via the telephone with a pain clinic nurse. I told her the injections had not worked. Since then I've been waiting for an appointment with the pain consultant to come through to discuss any further options. The waiting lists are so long for everything and in the meantime we are just left to self manage. I asked about seeing my gallbladder consultant privately and his secretary said because I'm already on his NHS list I wouldn't need to do that.

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    • Posted

      Hi Katie, was it done under ultrasound as trigger point injections aren't always. You need rectus sheath nerve block and this is done using ultrasound as guidance right where your pain is, trigger point injections seem to be more random. Did they do the carnett test on you? 

      I see the doctor everytime and they certainly don't give me a phone appointment with the nurse as they haven't got the experience. I hope when you get to see the pain consultant that he'll check you out properly as chronic pain is very hard to treat. I've done lots of research into it and they do have to have an idea of the cause.

      I know if mine doesn't work very well this time that they'll look at acupuncture and the tens machine but I might have another private appointment as they will do other treatments that aren't on the nhs.

      Yes I'm on lots of pain relief as well as amitriptyline as that also helps nerve issues but it only takes the edge off.

      Of course you can see a private doctor but you'll need to contact the private hospital directly and then get a referral from your gp. By that time of the gp referral it only takes just over a week and then you have an appointment within a couple of days of them receiving it.   You may not see the same doctor as your nhs doctor but thats probably better so you can get another opinion. You can be on the nhs and do private appointments at the same time, its upto you, don't let anyone say you can't. 

      I would contact your nearest private hospital and find out how much it'll cost and what you need to do to get a referral. Its more peace of mind than anything. Mine cost around £170 which seems alot but it did put my mind at rest while I was waiting for my nhs appointments to come through.

      Keep me updated.

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