Sphincter of oddi dysfunction/pregnant

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Hi all so I was diagnosed with SOD at the age of 19 after suffering with hyperparathyroidism and acute attacks of pancreatitis putting me in hospital every 6 weeks or so from the age of 15, I am 26 now and pregnant with my second baby, i found that my condition improved dramatically from being pregnant and now only have hospital admissions once or twice a year and can control the smaller flare ups with GTN spray. How are you all coping? i struggle often to find a job that copes with absences due to sickness, and i am physically exhausted trying to push through and power on when looking after my 2 year old. I also cant tell the difference between a SOD flare up and and Pancreatitis flare up. lastly being pregnant i cant tell if i am throwing up and exhausted because of SOD or the pregnancy. I don't qualify for PIP so my partner is having to support us on just his wage when i can't work. Sorry for the massive report, just looking for some help, support or advice. Big love all.

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10 Replies

  • Posted

    i think i have SOD.

    please can you tell me how you were diagnosed?

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    • Posted

      My consultant sent me for a HIDA scan. where they inject you with a small amount of morphine and scan you to see the reaction. GTN spray helps with flare ups for SOD. It took along time and lots of hospital visits to diagnose, so just keep on to your DR and consultants. good luck.

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    • Posted

      I thought that only an upper GI Endoscopy can pick up SOD?

      I have been for many tests and even had a HIDA scan showing a good functioning gallbladder at a 70% Ejection rate. would that same test have also shown SOD as i have been convinced my pain is related to this or pancreatic issues?

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    • Posted

      I had my Gallbladder removed before i had the HIDA scan. The scan diagnosed me with SOD, and thats when they started me on GTN spray, as the risk of recurrent pancreatitis was quite high im my case they didn't want to do an endoscopy unless really really necessary. So i would say if the Hida scan didn't pick up SOD its probably something else. Maybe more pancreatitis? what are your symptoms?where is your pain?

      and what is your routine when you get a flare up? xx

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    • Posted

      it started in November 2018. upper right quadrant pain just under the right rib cage extending to my back. it literally feels like a knife going through me. the pain is constant but the intensity is worse at various times. it used to be more intense at night but now it pretty much happens all the time. i have had 3 laparscopies in one year to try diagnose but nothing conclusive. i had my GB removd but nothing improved. when the pain is severe i get a very bloated tummy. stool smells like partially undigested food. itchiness. its driving me insane. i had a blood test for pancreatitis but those were normal. something is causing this pain...

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    • Posted

      another thing would the gtn spray help with pancreatic pain as well or do i need a SOD diagnosis to get the spray? at the moment i dont have any specific routine. i am in pain and try let it ride its course and if its unbearable i take an anti spasmodoc

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    • Posted

      oh oh bless you! I know how frustrated angry and upset I was when I couldn't get an answer for my pain so I know exactly where you're coming from.

      My pain was on the left side upper quadrant radiating around to the back, it starts as a dull ache and get worse and till I was doubled over, and it was accompanied with severe vomiting to the point where I couldn't even keep down water that was normally the point that I got admitted to hospital. I've only had pain on the right side as you described a couple of times and that was when I've had severe Pancreatitis. I'm not sure if any of that is helpful or not. i really hope you get a diagnosis soon! just keep pushing ask for more tests ask for repeated tests ect. If you have any other questions im here.

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    • Posted

      its very frustrating yes!

      so from your experience SOD would be felt more to the left of the abdomen not the right. perhaps my issue is the pancreas then.

      Doctors dont want to do anympre tests saying its either sibo or IBS...i know what they feel like and this is 100 x worse. hope i get to the bottom of it soon. do you still take the gtn spray? where can i get it from?

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    • Posted

      In my personal experience, yeah pain is more on the left. Maybe try a different doctors? yeah i still take GTN I get it from the doctor's. not sure if you can get it without a prescription, but might be worth going to a pharmacy to check. fingers crossed for you.

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    • Posted

      yes all my pain is on the right side extending to the back. i am thinking of traveling to India to seek medical assistance. i hear there are alot of people who travel there because the doctors are very good. do you think fatty liver would cause so much pain?

      what does gtn stand for?

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