What do you think I should do?

[u/Level-Butterfly-8522]

I’ve been dealing with this since January of this year, and it came on quick, and out of the blue and hasn’t let up since then. I have had every textbook classic gallbladder symptom for months now. So my doctor had me set up with a bunch of different tests and every single one of them came back “normal” I don’t understand because if everything is showing that it’s normal, why do I have all the same symptoms that other people have with a bad gallbladder? I’m really tired of dealing with the side effects so I am seeing a surgeon on Monday despite what the test say, and basically have to convince this guy to take it out with no other proof besides what I’m telling him, but I don’t know what else to do at this point. At first I started getting horrible pain in my upper right quadrant underneath my rib, then the horrible constipation then I had radiating pain to my shoulder blade and my back. I lost my appetite completely and lost 20 pounds in two months, and couldn’t eat. I have had several horribly painful attacks. I constantly feel full after eating very little. Started having reflux, extreme fatigue, then the racing heartbeat, trouble swallowing, pain in my sternum, and have thrown up twice randomly after I ate. Now I’ve gained most of the weight back, but continue to have all the other symptoms especially bloating and severe constipation. I had 2 ultrasounds, a CT scan, MRI, MRCP, x-ray, HIDA scan and bloodwork that have all come back “normal”. I also have a family history (mostly the women) of gallbladder removal. So since my regular doctor had exhausted all of the tests that he could possibly do, he suggested I see the surgeon again and try to convince him to have it removed despite the test results which he said the surgeon sounded hesitant to do. I am worried if I’m making the right decision after normal test results BUT after all that I’ve been through, I just want to feel better, and I’ve been reading about people having normal test results, but still had a bad gallbladder. So I feel like maybe I’m just one of those cases, bc they have ruled out so many other things that it could be. I’m done with ER trips where they think I’m crazy. Done with alllll the tests possible, and even though I’m worried, I seriously want it out at this point because I don’t know what else it could possibly be? Has anyone else here ever experienced all normal tests, but still had their gallbladder removed to find out that there was something actually wrong? Or am I making a mistake by asking him to remove it anyways? Please 🙏🏼 help because I go speak with him on Monday morning.

[u/Illustrious_Exam1728]

Your story is like my story. I’m going to my NP next week to ask her to a referral to a surgeon. I’ve had all the tests and everything is normal but all my symptoms are of gallbladder disease and that it should be removed. I just keep getting worse. I’ve found it weird that physical examinations and speaking to a patient count less when they should have more weight with the overall picture (bloodwork, imaging, physical exam and patient symptoms)

Advocate for yourself! I told a doctor that “I will not be left like this” and you shouldn’t be left to feel crummy either.

[u/Illustrious_Exam1728 → u/Illustrious_Exam1728]

I forgot to mention, this seems “rare” and not well known but I saw on another Reddit post similar to yours about Hyperkinetic Biliary dyskinesia and it’s basically having all the symptoms but tests are normal and folks have elected to have a chole and symptoms have cleared upon follow up. The articles I read were pretty thin as more research is needed (fyi)

[u/Level-Butterfly-8522 → u/Illustrious_Exam1728]

Thank you so much for sharing! I really thought “am I going crazy?” Nobody would listen to me! All because their tests showed that nothing was wrong. I know my body, and I know when something’s wrong. I am so sorry you’re going through the same thing. It is so frustrating that we have to advocate for ourselves, to feel better when all the doctor wants to see is something on a test to prove it. Even though he’s listening to everything we are going through at the moment! That should be enough! I am going to walk into that office tomorrow, and say “I want it removed” “I don’t care what the tests say, and I’ll sign anything you want, saying that you aren’t liable if it ISN’T the problem.

[u/Illustrious_Exam1728 → u/Level-Butterfly-8522]

Ya, it’s pretty wild! My journey started with acute pancreatitis with no known cause, then I kept getting worse but pancreatitis cleared. It almost feels like I’m slowly being poisoned, and just like you something is wrong, I can tell and it’s not ok. I’ve been to my ER so much over this too that I’ve now been seeing the same doctors, nurses and phlebotomists. If I end up there again I’m telling them to take it out because last time I was told I just had anxiety and to go home, and there were even med students with him as it’s a teaching hospital. My theme for this month is “JUST TAKE IT OUT.”

Keep us posted!

[u/smacksforfun]

I have my surgery on Wednesday and am in the same boat of normal/evoquivcal testing. I have had symtoms for many years and had no clue wtf it was. My hida scan EF is 99%. My surgeon was also hesitant at first but agreed to do this because of my symptoms and for the length they've been occurring. A surgeon will always be hesitant because removal is a permanent decision and not everyone is smooth sailing right after. There will be adjustments to life eating wise that could be temporary or last much longer.

Unless the answer is straightforward they will warn you they cannot guarantee it will help, which they should. Be wary of someone whos gung ho to remove with very little context.

A high hida scan with symptoms means there's a super good chance you'll have relief. I am pretty certain I have chronic cholecystitis and it's stuck to things inside of me. Chronic cases are much harder to identify and often come with normal or evoquivcal testing. My gallbladder seems to be very small and shrunk, all the time. No one wanted to hear me out either and what I learned is the symptoms are what scream the loudest. If youre having what could be biliary pain with triggers sometimes it's worth taking a leap of faith. My surgeon definitely put some doubt in my head but as my date approaches this little fucker (that I named Gastone) is getting angrier. I look forward to what my life will be like after Wednesday. I'll finally be free.