Unidentified abdominal pain

I’m sorry, I know how you feel. My pain is upper right and sometimes upper left that goes to my upper back. It’s just super annoying how no doctor can figure out why!

@grace29 - what was the name of the medication your neurologist finally gave you for “abdominal migraine”? I’ve had the same problem you have had, for several years and scans have shown nothing.

@amm97

Just getting doctors to hear your story. If it doesn’t fit in their little box then they don’t care to to take time to give an opinion let alone a referral. What is their patient was a loved one

PLEASE READ THIS! It's very frustrating to read comments about abdominal pain below right (can be left or back too) rib cage. I too suffered for about a year with horrible abdominal pain. I had EVERY test, MRI, CAT, blood work, etc and NOTHING showed up. I finally was convinced it was my gall bladder. I was VERY lucky to be recommended to an excellent gall bladder surgeon. In 5, yes, only 5 minutes he ruled out my gall bladder. He put me flat on his table and told me to raise my legs to perform the Carnett test. The pain was awful but he said "you have ACNES" (abdominal cutaneous nerve entrapment syndrome. He sent me to a pain institute instructing them where to inject linocaine (trigger point shots). The first shot 100% knocked the pain out but only lasted a few days. The relief from the shot did CONFIRM it was ACNES. 98% of doctors never heard of it. After an exhaustive search I found an amazing hernia surgeon in Phoenix who also never heard of it but quickly researched it (there are plenty of links - google). On 9/2/21 Dr Gillespie at St Joseph's Medical Center performed robotic laparoscopic surgery cutting my T8, T9 and T10 abdominal nerves. The actual surgery took 29 minutes. I left the hospital that afternoon completely cured. He does accept new patients for ACNES. My posting have brought several ACNES patients to him who were also cured. Feel free to contact me if you need more information.

@jgroudan

Problem is my pain radiates from below navel to under my xiphoid. It’s always down the middle. I have had all the scans, meds and appts. Now been four years and slowly keeps getting worse. I’m depressed, can’t work and hard to keep my head above water.

I have had around 9 different injections. Only one time worked two years ago. That was when my daily pain was a 5-6. It’s now 7-8 and all the time. Once a pain mgt doctor at one of our hospitals did lidocaine and steroids on each side of my stomach. Pain next day went away for two days and came right back. Neurologist says it’s neuralgia and miss firing nerves. Issue is I don’t think carnetts sign works with me. I don’t have many options left to try.

Hi,

My test results just came in for the MRCP and HIDA and are negative to remove my gallbladder. Eight months ago they said there was sludge and an enlarged gallbladder, that seems to have gone away? I have significant daily abdominal pain, can’t eat without pain and gas. I don’t know where to turn for answers and feel this is not sustainable. Any thoughts about other diagnoses? My doctor doesn’t think it’s MALS

Thanks

@drlori76 It is frustrating when modern imaging technologies fail to detect what the problem is. What were the findings on the scans? "Negative to remove my gallbladder" doesn't necessarily mean "normal".

My daughter and I had HIDA scans that showed "sluggish" gallbladders, but NO stones or sludge, thus questionable for removal. We both had surgery due to the symptoms, and the pathology findings were chronic severe inflammation. I was fortunate that my primary & the surgeon practice in the same clinic, and she told him to "trust Sue's instincts" so he did the surgery. I no longer have all the symptoms & pain.

What does the doctor suggest as the next step?
Sue

I just heard from my GI tonight. She wants me to start low dose Imipramine, it’s supposed to help with GI issues. I guess I’m not going to have surgery. My concern is the pain which Tylenol doesn’t help with.

Curious when you had the HIDA test done if you felt worse during it? I had the test done on the second day of going to the ER with right sided abdominal pain. I had felt pretty lousy for a few months leading up to this but felt so nauseous a little way into the test. The tester said he had enough info showing sludge in my gallbladder although no stones or blockage. I had my gallbladder removed that night. That was 9 years ago.
The downside of having my gallbladder removed is having to really watch my fat intake. That problem kicked in about 6 years post removal of gallbladder. If I overdo on fats I feel nauseous. Apparently my liver is not doing a great job on releasing bile at the right times so I suffer from bile reflux and take daily medication for that. I would exhaust all other possibilities, such as food intolerances causing the pain, bloating and gas. My GI tested me for Celiac, SIBO, CSID and took an enzyme assay during an endoscopy. We found some answers and changed up my diet drastically. While it is no fun to maintain, I definitely suffer way less from the problems you mentioned. Best of luck.

It sounds like you got a good work up. I have Kaiser Insurance and no one has tested me for other issues. I think I will ask why not?

They are treating me with medication but haven’t figured out what’s going on🥴