Abdominal pain - all tests negative. Am desperate for help :(

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I'm at my wit's end and so frustrated sad For the past two years I have been dealing with the following symptoms that come as regular attacks, getting progressively worse:

- burning painful sensation in middle of chest directly below sternum

- pain moves to right side, and becomes dull aching pain with sudden surges of the burning, sharp pain

- nausea

- vomiting about 25% of the time with these attacks

- sometimes constipation, sometimes diarrhea

- excessive sweating

These attacks last 3-5 days, and always after eating. The pain is sometimes so bad I have to go to the ER, and at this point the attacks are coming so often that I can't live my life. I've had the following tests done, all negative:

- colonoscopies

- endoscopy

- ultrasound

- small bowel series

- MRCP

- ERCP

- incomplete HIDA scan (see my other post)

The *only* thing that has shown up so far is that my common bile duct is dilated. No evidence of stones, sludge, etc. The guy who did my ERCP basically told me there's nothing wrong with me, and that in cases like this, it's sometimes just nerve damage that fixes itself over time and I should start looking into "pain management" which sounds like a fancy way of saying I'm a hypochondriac. 

I'm not sure what to do at this point, what avenue to take, who I should see. I am a semi-invalid at this point now, rarely leaving the house because I don't feel well enough; my life is basically on hold right now and it sucks. Has anyone run into anything like this before? Any ideas?? 

 

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6 Replies

  • Posted

    Think you really need to see a gastroenterologist for them to investigate. I’m lucky in that my HIDA showed a low ejection fraction. Original ultrasound showed stones then second they couldn’t see them but gallbladder was very distended and painful on scanning. Third one they think they saw stones again. When they took the gallbladder out it showed I had chronic cholecystitis so had obviously been getting acute cholecystitis attacks for a long time. The surgeon kept telling me it wasn’t my gallbladder but I argued it was and a different surgeon listened. You need to push for something to be done. Not sure where you are in the world? xx
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    • Posted

      I am seeing a gastroenterologist, how else would I have been able to do all those tests that have come up negative. In fact, I've seen two different GIs, and been to the ER twice where they did full workups.

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    • Posted

      Wasn’t being patronising but it’s the gastroenterologist who decides if you get surgery or not. Sometimes all tests come back negative and it’s still the gallbladder and it’s not until they remove it they realise the extent of the problem. Keep persisting on going to doctors when you’re in pain and hopefully they figure out what’s up xx
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  • Posted

    if you have ruled out gastritis,ibs  then gb might causing this issue. for me i had all these symptoms where it did not show stones intially, then after 5 years ,ultasound showed stones.
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  • Posted

    There are a lot of people in the same boat I’m afraid. You need a diagnosis to get surgery, but all tests are proving negative. It’s a desperate situation sadly. 

    What is your diet like? Usually, if it’s gallstones or low ejection, you get some relief by eating a low fat diet.

    Other than that I don’t know what to suggest. Just keep on going to docs and basically nag them into following up on your symptoms. Used to know a nurse who said pain was all in the mind until she slipped a disc in her back. I’ve been in a similar situation- thought I had rheumatoid arthritis, but tests came back negative and all they could do was prescribe pain killers. Made me feel like I was a hypochondriac!

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  • Posted

    I hear you Robert, have had all those tests and all come back as tho I am just fine. I am not. Just had the Hida scan on tuesday and will not see the Gastro doc until March 12.. I am hoping she sees something on them as I have just giving up eating. Some soup here and some fruit once in awhile. I have lost weight ( 25 pounds in the past 6 weeks. I am gonna  hope for you that they do something for you. You are not a hyperchondriac just like I am not . good luck and keep on them
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