Sphincter of Oddi dysfunction diagnosis advice

[OrlandointheWilderness]

Hey guys, looking for any advice on how to possibly get referrals/diagnosis for SOD.
had my gallbladder out in 2008, I’m 41 year old woman. For the last6 years I’ve been suffering excruciating attacks - pain very similar to gallstones but so much worse and radiating badly through to my back. Pain is upper stomach to the right slightly. I’ve fad hours of it over Christmas - Christina’s Eve 1 hour, Christmas Day 4 hours, Boxing Day 5 hours and last nights joy was 6 hours of horrific unrelenting pain. I went to A&E last night where they gave me oramorph which actually made it so much worse!
I had a clear endoscopy on the 22nd and contrast CT done last night that they couldn’t see anything on. Bloods apparently were okay but I don’t know what they tested.
Who do I need referring too? Drs aren’t particularly helpful and I think if I go in with a strong request it will be better. Any advice welcome - I can’t go on like this!!!!

I'm sorry I'm no use to you as I don't know what the answer is, but I had a friend whose ex-gf suffered with this ...she sang in a band and had to quit as it was so bad at times. I'd never heard of it before. It sounds horrendous and I'm so sorry you are suffering! Probably you would have been referred to Gastro if the tests had shown anything worrying. Do you have a patient copy of the discharge letter they send the GP from A&E, so you can see the plan?

After I had my gallbladder removed I continued to have “attacks” so I started to keep a food diary (ate like normal) and the repeated attacks always occurred after cheese (pizza, cheese on toast, Macaroni etc) so I cut it out & never had attacks again. Lots of people still have to adjust their diet after a Cholecystectomy - just not to the extreme like prior to the op.

Sphincter of Oddi dysfunction, is a bit like Fibromyalgia - it’s diagnosed when everything else has been ruled out, and many clinicians still view it as functional.

Again like Fibromyalgia Sphincter of Oddi Dysfunction has links to psychosomatic factors, with people who have it often showing higher rates anxiety, depression, somatisation and past trauma.

@LML1989ALI've kept comprehensive food diaries for years. I’ve paid privately to check for sensitivity to gluten/dairy etc and nothing. I actually went a year without alcohol/dairy/gluten/sugar and still got attacks. There is genuinely no pattern - I could eat a massive meal at a pub and be fine (I don’t 😂) but I’ve also had it at 10 am in the morning when my last meal has been an undressed salad at 5pm the night before.

So if there’s no triggers, you’ve had scans and bloods, have you thought maybe it is psychosomatic?

I don’t have any history of depression, anxiety, trauma or anything like that. Quite frankly I don’t give a flying fuck what it is as long as I can have a future where the worst pain I’ve ever experienced (and I’ve broken my back in three places, given birth and had a gallstone travel down the pancreatic duct. This is far, far more severe.) isn’t a feature. I don’t want diagnosing via MN, I was looking for advice from people who have SOD of what steps to try and go forward with.

The scans I’ve had won’t show SOD, and the bloods won’t either. It is diagnosed via specific tests

Was breaking your back not traumatic?

Breaking my back was a very long time ago! I certainly would not rule out a psychosomatic cause, as it isn’t my job to rule things out. That’s all I wanted advice on - the best department etc to ask to be referred too.

Actually @LML1989AL I have had a bit of a few years, I generally don’t admit it because it makes me feel like a failure. I went back into education in 2019, then did two years of a nursing degree. I withdrew at the start of year three as I was struggling - I’d had a few awful placements . So it isn’t true to say I haven’t had any anxiety etc.

Have they done an MRI to check there’s no stones trapped in your bile duct?

No not yet. However I had a contrast CT last night which was clear.

I've a similar experience to you @OrlandointheWilderness after my cholecystectomy. I found I got the same pain as my gallstones triggered by codeine which I took for migraine - it didn't work for the migraine and getting the abdo pian at the same time was awful.

Luckily I have found it easy to avoid mine just by avoiding the codeine so I haven't pursued it, but if I ever need strong opioids I intend to ask for oxycodone which supposedly causes less bile duct contraction. (I'm actually a palliative care doctor and had to research this once for a patient with sphincter of Oddi dysfunction)

In your shoes I'd ask for a referral to Gastro.

Thank you @AnnaMagnani

My mum had many of the symptoms you describe after having her gall bladder removed. After about 3 years she ended up being admitted to one of the big London hospitals as her own GP basically decided she was going crazy, but her weight had dropped to 7 stones (she looked like a walking skeleton) they discovered that gall stones had floated into her bile duct and were basically causing massive infection (this was the late 80's so none of the sophisticated tests they have now) They removed the stones (she was bright yellow with jaundice by then as well ) and pumped her full of antibiotics and after that she had no further problems. It sounds like you need to insist on a referral to a consultant specialising in gall bladder/bile duct etc and find out what they can actually do

My sisters SODD was diagnosed by giving her morphine which brings on SODD if you have it

I had my gallbladder out in 2012 and suffered three severe attacks afterwards, all linked to codeine. Since then I’ve avoided codeine and been fine.

@MrsDoubtingMyself yes the attack was horrific, but after oramorph it was another level. Absolutely unbelievable the pain that caused.

I doubt anyone is around but here we are again - started at 9pm and I’m still in pain. I’m exhausted and broken, I’ve had enough. Today I had a cup of ginger and lemon tea, a small packet of snack a jacks and a piece of plain turkey. I reckon about 300 calories max. I’m wiped out after hospital all night last night and while the pain isn’t off the charts tonight it’s plenty to stop me sleeping.

It seems to me that the oramorph reaction proves that you do have SODD.

You therefore need to be treated for SODD imo.

There are various treatments available. If you can get referred to Dr Shyam Menon (Wolverhampton/Birmingham) even for a phone chat, that will be very helpful. He's amazing (according to my sister)

Obviously any big hospital will probably have a SODD expert....but I know of Menon

I've seen my sister with SODD pain. It's horrific. Her Consultant told her it's the worst pain anyone can experience

@MrsDoubtingMyselfit finally eased at 5.30. I’m just wiped out, completely exhausted and terrified to eat anything.

Thank you @MrsDoubtingMyself

@OrlandointheWilderness have you tried using Buscopan for the pain? My sister says that sometimes can help a little

Just had that prescribed at A&E - couldn’t pick it up until today as the hospital pharmacy was shut at 4am when we left and it can only be filled there!! Will try anything at this point.

If you have to buy it at any stage, should it help, Boots do their own brand IBS cramps relief.....much cheaper