Connect
← Return to Sphincter of Oddi Dysfunction: What helps you?
Discussion
Sphincter of Oddi Dysfunction: What helps you?
Pancreatic Disorders | Last Active: May 22 3:01pm | Replies (50)Comment receiving replies
@schelone hi, I'm sorry you're going through this. I was diagnosed with this 2 years ago after having severe right sided abdominal pain for a few months and multiple presentations to ED. I had had my gallbladder taken out 31 years prior. It took a lot of tests, and me refusing to go home from the hospital, until they actually found the problem!! They also accused me of being a closet alcoholic because my liver levers were through the roof🤬
I was told it is quiet common AFTER a gallbladder removal!
I had a procedure called an ERCP, very much like a gastrocopy, but looking at the liver and pancreas. They basically did a sphincterotomy and dilation so all the fluids can run through again instead of getting built up all the time. I still get a small amount of pain every so often, but I'm very grateful they found out what it was. I hope they can find out the same with you and just get it fixed. Good luck😘🫂
Replies to "@schelone hi, I'm sorry you're going through this. I was diagnosed with this 2 years ago..."
Connect
@tracey1327 I wanted to add some additional context to my situation, because I think this is where I keep getting stuck with providers.
My MRCP has been normal with no ductal dilation, and my liver enzymes are mostly normal — even when labs and imaging were done during a pain flare. Because of this, no one is willing to proceed with ERCP.
From what I understand, this pattern is most consistent with what has historically been called Type III Sphincter of Oddi dysfunction (or functional biliary pain under newer criteria). I’m also aware that multiple studies have shown ERCP and sphincterotomy to be largely ineffective in this group, with a real risk of complications.
That’s part of what makes this so frustrating. On one hand, I’m being told there’s “nothing objective” to treat. On the other hand, I’m living with daily RUQ pain that significantly affects my quality of life.
After having gallbladder surgery and having my symptoms become dramatically worse, I’m honestly terrified of making things even worse with an invasive procedure like ERCP — especially knowing the risks and the low likelihood of benefit in cases like mine.
I feel stuck in this no-man’s-land where the pain is real, the impact is real, but the lack of abnormal tests seems to shut down further thought or creativity from the medical side.