Still struggling and no answers 😢😢😢

Posted , 9 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi guys 😊 I saw my specialist for the 2nd time last week and he seems to be clueless as to what is going on. I'VE been suffering with moderate to severe upper right quadrant pain that radates to my back and lasts from 3 hrs to (at its worst) 4 days. IT seems to come on after greasy/fatty meals but haven't pin pointed exactly what causes it. I'm constantly tired, sometimes suffer with bad nausea but never sick.

Up to now ive had

Ct scan which was fine

Ultrasound showed slightly dilated bile duct

Blood showed slightly elevated billarubin levels on a couple of occasions

Endoscopy was fine

He sat there and simply said I don't know what to do for you. WHICH is very frustrating when you don't seem to be getting anywhere. I asked for a HIDA scan so should get the appointment through over the next few weeks as much as I don't want anything to be wrong I'd rather something come back showing something is and hopefully have an answer to all this pain.

No pain killers work and at the moment I have an unbarable pain in my right upper back/shoulder blade. My docs are fed up with me and is starting to suggest ibs but I don't think it's the case.

Work is also on my back and had to have an attendence review meeting and was told any more time off and I'm in big trouble. I've already cut my hrs from 38 to 18 and still struggling 😕

Does anyone have any suggestions on what to do next if the hida scan comes back ok? I feel my specialist could be doing more but he just seems too laid back

0 likes, 22 replies

Report

22 Replies

  • Posted

    Hi

    this appears to be common from what ive learned from forums over the past year and a half.

    I too have the pain you describe, i was 34 when it started and extremely fit and not over weight, dont smoke but did drink a little too much alcohol.

    I had normal CT

    normal endoscope

    several normal ultra sound

    normal bloods with slight ALT raise (upto 125 but now around 60)

    normal heart trace and ecg multiple times

    Ive been in emergency room around 20 times since April this year and docs have no clue what is going on.  They wanted me to have mri but i cant due to have small metal fragments in my eyes.

    I am booked in for a laparscopic investigation and have the option of having the gallbladder removed in 1 weeks time.  I think its my gallbladder causing the pain because when i press below my ribcage with 2 fingers when i pull my tummy in, its excruciating and always in the same spot.  I have pain in my upper right back,  now i have belching alot but just small belches and its random, ive had dizzy spells, tired, and sometimes i get a fluttering feeling in the spot around my gallbladder.

    Its really awful.  im afraid if the gall bladder is removed that it wont help but im going to have it removed because if that doesnt fix it, its ruled something else out and i can live without a gallbladder.  Sounds extreme but after 18months suffering, sometimes for days on end, im prepared to try anything.

    My pain came and went and was much less frequent when it started August last year but now i get maybe 1 or 2 good days followed by 5 or 6 bad days.

    I did ask for an ercp but the consultant said its a risky proceedure and wanted to do the laparoscomy instead.  that will show the external view of the organs etc but not inside.

    They say there is no evidence of micro lithiasia or inflammation on the ultra sound but ive read of people with negative tests still having sludge in their biliary duct work and gallbaldder.

    Im now on codeine phosphate daily which doesnt help much any more but will continue to take until after my op.  

    All you can do is keep pushing, its a difficult situation because i feel the doctors think its in our heads when its not.  The fact you have raised biliruben and dialated bile duct may mean theirs maybe small stones in the liver but im not a doctor, this is just what i have read.

    I wish you good luck.

    Report
  • Posted

    I had the same symptoms for over 6 years I was suffering for a long time. They did every test you can think of. All came back normal I even went to emergency room over 10 times. I went to a specialist for the second time. She looked at my charts over the years and said the only thing it could be is your gallbladder. She had me do a Hida Scan and it came back at 96% which means overactive gallbladder which meant it burned out years ago but when it did cat scans, blood work, ultra sounds ect everything looked perfect. So she said it has to come out. I been suffering for some time so I told her let me think about it. I just wanted to research surgery procedure and do some research on the doctor. I called a few days later and scheduled surgery I got to admit I was very nervous. I had the surgery 4 weeks ago and feel 100% relief. I still have nausea sometimes but I'm so glad I got my GB removed. I'm almost certain it's your gallbladder, get it removed the surgery wasn't bad at all like I thought. The only thing is people say you can go back to work in a week don't believe that, take your time and don't overdue it and stick to a specific diet. I stay away from dairy, meat,sugar, wheat, any processed foods. You will be OK trust me

    Report
  • Posted

    I had the same symptoms for over 6 years I was suffering for a long time. They did every test you can think of. All came back normal I even went to emergency room over 10 times. I went to a specialist for the second time. She looked at my charts over the years and said the only thing it could be is your gallbladder. She had me do a Hida Scan and it came back at 96% which means overactive gallbladder which meant it burned out years ago but when it did cat scans, blood work, ultra sounds ect everything looked perfect. So she said it has to come out. I been suffering for some time so I told her let me think about it. I just wanted to research surgery procedure and do some research on the doctor. I called a few days later and scheduled surgery I got to admit I was very nervous. I had the surgery 4 weeks ago and feel 100% relief. I still have nausea sometimes but I'm so glad I got my GB removed. I'm almost certain it's your gallbladder, get it removed the surgery wasn't bad at all like I thought. The only thing is people say you can go back to work in a week don't believe that, take your time and don't overdue it and stick to a specific diet. I stay away from dairy, meat,sugar, wheat, any processed foods. You will be OK trust me

    Report
  • Posted

    Hi Alison, is your doctor a specialist in gastroenterology as he should be acting differently. I sympathise as I too have been in URQ pain for the last few months with a normal ultrasound, CT, gastroscopy and raised bilirubin levels which is down to Gilberts syndrome and very common but shouldn't cause any problems except jaundice.I'm off work today myself because of the pain but I'm self employed so can work around most of it with my business partner but its not easy when your in so much pain. 

    I've got an MRCP in 2 weeks and if that comes back normal my consultant is going to put me in for a HIDA scan but I don't know what will happen if that comes back normal. I find that as soon as I eat the pain starts and gets worse as the day progresses but I've had it bad all night and all today. 

    Can you see a different specialist?

    Report
  • Posted

    I will bet your HIDA scan does not come back normal. Everything you describe is classic gallbladder. Make sure you ask your doctor for the ejection fraction - a lot of doctors will call it "normal" when it's not. Similar to Jerome, mine came back at 98%. I got mine out less than 2 weeks ago and I feel better every day.

    Report
    • Posted

      i had hida test and they said it was normal, although they did not give me the percentage ejection fraction rate.  the radiologist also said to me it wasnt emptying well.

      i have my laparoscomy on monday, i hope it finds something.

      Report
    • Posted

      I would ask for the ejection fraction or a copy of the results. Anywhere between 35%-75% is considered normal. Anything above or below is considered hyperactive or hypoactive. A lot of doctor's consider anything above 35% as normal (as in my case) and it has been proven an incorrect theory.

      I've also heard of people's test coming back completely normal and they ended up having their gallbladder out and their symptoms went away. Not everything is caught by tests. Stones and sludge have been missed on ultrasounds. Your gallbladder could've had a good day during the HIDA scan and performed fine at that particular time. The symptoms after fatty foods is like almost a guarantee that it's gallbladder. Unless you have IBS and a trigger is fatty foods.

      I hope the laparoscopy goes well and you get some answers!!

      Report
  • Posted

    Thanks guys for all of your replies. Yes I've been seeing a gastro specialist but in my opinion he's pretty useless. First time I saw him I mentioned the back pain and he pretty much said that's not a symptom and said it was possibly my ribs. DEFINATELY not them. He sent me away saying he would review my tests and see me again in 3 months. It took 4 months to get back in to see him and he didn't have a clue what to suggest next so it was me that brought up the hida scan. Hopefully I will get the appointment through soon. It seems so many people are struggling to get diagnosed and are having to put up with painful attacks and not a lot is being done to make diagnosis easier. If I could have my gall bladder out tomorrow I would just in hopes to get rid of this pain. I had the same before I had my appendix out. Ultrasound came back fine but was in agony so they did a laproscopy investigation and found it needed coming out maybe I'm just an awkward patient 😂😂 I hope you are all well and not in much pain today xxx

    Report
  • Posted

    Hi Alison, how r u feeling today? I know how you feel, I so wished that my ultrasound showed gallstones then I could've got my gallbladder out and I wouldn't be in pain anymore. I'm still hoping its gallbladder and my consultant is still thinking the same but in the UK I have to go through tests in an order. I hope you get your date for a HIDA scan soon. 

    Report
  • Posted

    To anyone having these pains I suggest you ask for a ultrasound scan on your gallbladder, it's usually down to gall stones. It can cause pain through your ribs to your back and even spread to your stomach. Try to naturally get rid of the gall stones if u have them if not opt to get keyhole surgery if it's too damaged. If u have the aurgery it basicley feels like u done a thousand trillion sit up and is excruciating after the operation and sitting up will be murder for a few days. I walked out hospital the next day as I was able after getting mines removed. Before that I had a c section aswell so it felt like I was getting contractions like child birth, I was rushed to emergency then sent home with dehydrocodiene etc and told nothing was wrong. Late in a different city days later I was rushed to a different hospital who cared more and done all sorts of scans on me and the ultrasound showed gall stones... It can derange your liver which happened to me so I suggest not to wait and get it sorted out. This was 5 months ago when I was 21. Now 22 and the pains are very rare and randomley some days get a seconds pulling pain at the gallbladder, the more time passes the better it feels and your body goes back to the exact same as it use to be.

    Report
    • Posted

      Get ultrasound and MRI scan done. I'm sure it sounds like Gall bladder attacks! Could show what organ is causing an issue if it's not the Gallbladder

      Report
  • Posted

    I have been having upper right abdomen pain for the last month. It is sharp stabbing. If I eat the pain is worse and in like an hour I wind up throwing up. All tests have been normal: CT, Xray and now an Ultrasound.  They also did an endoscopy which showed some gastritis, and the colonoscopy was clear. I have lost about 30lbs in this month and am not really eating anything. The hida scan was the most painful thing in the world as the second part I was in tears. The EF percent was 48%. I was told it could still be my gallbladder and we are looking into removing it. My alt and ast levels are really spiked too. I am meeting with a surgeon for pre op consultation but I am worried as all tests are normal but the pain is so bad. I also have been running some fevers on and off. I am pale and a little jaundice.
    Report
    • Posted

      The fact that you were in such agony during the second half of the HIDA scan is an indicator to me that it's gallbladder. Did they check your lipase levels to see if it's your pancreas? I'd like to think your doctor ruled out pancreatitis first...

      Report
    • Posted

      yea my lipase levels have come back fine. I just am so worried the pain i have been in is killing me. I have been out of work due to it. Like do surgeons remove the gallbladder based on symptoms and all the connections even though the tests come back negative. The pain during the second half seriously felt like death.
      Report
    • Posted

      My surgeon took mine out mainly due to my symptoms and that it was effecting me on a daily basis. My test came back "abnormal" to my GI but "normal" to my GP and surgeon. The surgeon recognized the condition but said it had been discredited. 

      Report
    • Posted

      So the surgeon thinks it is the gallbladder but since no confirmation, he wants an endoscopic ultrasound. He also said other surgeons may be willing to remove the gallbladder due to the symptoms pointing to it, but he is skeptical considering if there are complications...might look at another surgeon what are your thoughts? it sounded he is afraid if there is complication since he isn't a hundred percent sure he is skeptical. i am just sick of being sick and in pain. have you heard of an endoscopic ultrasound that's the test he wants to do. he stated my liver enzymes are really high

      Report
    • Posted

      No I haven't heard of that specifically. I've heard of an endoscopy and an ultrasound separately. If you feel confident that it's your gallbladder, I'd look for another surgeon. My liver enzymes were on the low end of normal so I can't comment there. I can relate to being sick of being sick - that's the main reason why I pushed to get it done.

      Report
    • Posted

      So i wound up getting admitted into the hospital on 11/10 with everything going on. On 11/11 they did the endoscopic ultrasound and found sludge and polyps in my gallbladder and my pancreas is inflamed. On 11/12 they removed my gallbladder. After that I have been able to eat. However the recover was a little rough as I was allergic to the prep solution and the dermabond which was used on top of the stiches. When pathology looked at the gallbladder once it was removed there was a stone in it. The surgeon acknowledged that my liver is damaged a little. I just got released from the hospital on 11/17 so now I am getting used to eating and am sore. But at least I don't have that sharp pain anymore and can actually eat.

      Report
    • Posted

      I'm sorry to hear you had to get admitted to the hospital sad

      But I'm glad to hear you had it out - and it clearly showed it needed to come out! It must be such a relief to be able to eat again and not have pain!! I hope your recovery continues to go well smile I know I'm more than relieved mine is gone and I'm still feeling better every day.

      Report
    • Posted

      I am healing everyday. I am also so glad that I am able to eat no pain. Not feeling that pain is such a relief. Can't wait til I am fully healed and this becomes a memory.

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up