Sphincter of Oddi Dysfunction: What helps you?

Hi, @islalaan73. Welcome to Mayo Clinic Connect. I'm sorry to hear you're having an awful time with this. What symptom is bothering you the most so far? What treatments have been prescribed, if any?

Good afternoon,

I’m hoping to connect with others who have dealt with chronic right upper quadrant pain, biliary colic, or possible Sphincter of Oddi dysfunction.

I’ve been struggling with RUQ pain for over 20 years. Until recently, it presented as flares a few times a year. On 7/24, I had my gallbladder removed in hopes this would finally resolve things. Unfortunately, the opposite happened — the pain is now far more severe, much more frequent, and has become an almost daily issue.

All imaging and labs continue to come back “unremarkable.” While the pain itself can be intense, what’s wearing me down the most is the constant fatigue, the mental toll, and the ongoing sense of hopelessness — especially not knowing what’s actually wrong with me.

There doesn’t seem to be a clear trigger. I’ve eliminated alcohol, carbonation, high-protein meals, and other common offenders, but the pain persists regardless. I was referred to Mayo Clinic by my PCP, and I truly thought that might be the place where someone would finally do some real detective work. Unfortunately, I received a letter stating they were not interested in taking my case.

At this point, I feel dismissed by many specialists — either because the case is “too complicated” or because the testing doesn’t show anything obvious. I’m exhausted and honestly at the end of my rope.

If anyone here has experienced a similar course — especially worsening pain after cholecystectomy with normal imaging — I would really appreciate hearing your thoughts, experiences, or anything that helped move things forward.

Thank you for reading.

@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😘🫂

@eeskildsen7 i think my SOD is back too and it's only been 2 years since my surgery! I've been getting severe epigastric pain again. But the gastroenterologist tells me it's not possible for it to come back🤷‍♀️
Did you have bad diarrhoea with yours?

@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.

@schelone https://connect.mayoclinic.org/comment/882481/ This posting looks very positive. Check it out.
Have you been to a major medical center or university medical center? The doctors there are a step above community based doctors. My husband took me to one when i was very sick. They knew right away what the problem was and how to treat it. A neuro-immunologist treats me to this day and she is outstanding! (I have lesions on my brain.)
You also said that Mayo Clinic turned you down. Can you ask your doctor to make a referral ?
I hope these suggestions help.

@becsbuddy Hi Becky - Yes, my current PCP sent a referral to Mayo Clinic but they turned my case down. Simply said they were not interested in the case. I am hoping he will make another referral to a large medical/education system. Thank you for the kind words.