Sphincter of oddi dysfunction

[MyStar86]

Hi,

I am seeking advice on where to go to find the right specialist that focuses on the sphincter of oddi dysfunction? I had my gallbladder out in 2010 when I was 23. I’ve had multiple endo surgeries and total hysterectomy this year but still zero relief. I am looking to find a specialist anywhere in the country that focuses on the sphincter of oddi dysfunction, ERCP’s etc. does anyone have any experience of this and any advice on where to go? Any specialist recommendations? I have found a couple in London but would be good to get advice from a previous patient.

Many thanks xx

[Lindle]

I don't think you are allowed to name medical professionals but presumably you need a specialist within gastroenterology and not an endo specialist. I would say your GP should be directing you on this or maybe there is a community on here on gastroenterology.

[MyStar86 in reply to Lindle]

Ironically it’s a very rare illness however there does seem to be a link with people who have endometriosis and have had their gallbladder out that’s why I posted on here plus I also didn’t know where to turn. Thanks for replying

[Hoopy587]

Hello, so strange to see someone ask about this here as I’d never heard of the dysfunction until I had it!I had the same as you - gall bladder removed & within 6-months I was still getting the same pain. I was under a consultant at Hammersmith Hospital who was brilliant! Mine was all via the NHS & I was referred from Kingston hospital as they thought my pancreatic duct was blocked initially but it wasn’t.

I’m more than happy to give you details of what happened so please feel free to private message me on here x

[MyStar86 in reply to Hoopy587]

Thank you so much!! I have sent you a message 😊 so pleased I didn’t know where to post to find someone who had suffered and had treatment. Thank you xx

[CrazyHoundLady]

I had my Sphincter of Oddi dysfunction diagnosed at my local NHS hospital. I too had been diagnosed with a gallbladder function problem after several episodes of illness but no stones found. I had the gallbladder removed but the problem returned and that’s when I got the SoOD diagnosis. I have type 2 which has liver involvement. My consultant has been great, he Botox’d it and so far so good nearly 4 years later. It is rare and I had a few trips to A&E where I was educating the medics. Only had one unfortunate episode where the lovely lad really didn’t listen when I said that paracetamol was not going to cut it and I needed stronger pain relief and antiemetics, eventually a more senior Dr appeared and dispensed the morphine and ondansetron and everything got better but I was in for the night by then.

Hope you get it sorted soon. Definitely recommend the Botox.

[MyStar86 in reply to CrazyHoundLady]

Thank you so much for sharing I have sent you a message.

I’ve been through similar but the spasms are out of control it’s so upsetting to of been through all the endo surgeries and total hysterectomy and still be in the same pain.

I’ve had morphine via a&e but the last visit they used diazepam which was like a miracle drug initially to stop the spasms but limit life given the body learns to tolerate it so I need actual treatment just need to see the right specialist that’s why I’m researching first as my local gastro just blamed the endo and my endo specialist even wrote a letter saying point blank it’s not the endo causing this and it was my bowel surgeon that I spoke to after regarding the sod but that’s not his field he doesn’t do ERCP etc that’s why I am going private anywhere in the country to find the right sod doctor xx thank you