I have been suffering for several months and seriously I'm not suicidal but if I was near a bridge I believe I'd have jumped off. I'm miserable and just trying to get thru this. Seems like it's one darn thing after another.

I'm in Journey for diagnose my pain and thé specialist think I have oddi's dysfunction too. Thanks for your talk. I'm french canadien (Québec), so sorry for my translation.

Same thing happened to me in 2004 hardly anyone knew about it. Horrible back pain. Got an ERCP got better. Until now I’m having same probably going to doctor

Hi there I know where you coming from . I have had bad pain since 2017 when I had gallbladder out now going from ERCP on Monday . Thankyou for video it helped . I don't vomit but the pain is bad goes to my back feels like someone is stabbing me

I went to your account page but didn’t see an update video. Is there a link to where you posted it?

I may have this disorder. I'm having procedures to try to find out for certain.

I have SOD. I am 71. And very active and healthy. I refuse big pharma meds and have eliminated ALL foods that cause pain. So my diet is simple but I have minimal pain. I take enzymes and probiotics and prebiotics. The worst things for me to eat is garlic, spicy foods, alcohol and dense meat like a steak or processed meat like hot dogs. Plus I chew my food til it dissolves in my mouth. I eat minimal sugar and zero junk good or soda pop. So I rarely have an event bec of my food choices. Pain or a boring diet… ? PRAYERS FOR ALL THE SOD PARTNERS OUT THERE ❤️.

Would love an update video

Hey thanks so much for your story ❤

Please reach out to me. I'm desperately looking for answers. I had my gallbladder removed 14 years ago but for the last 3 months I've been experiencing what I truly believe is sphincter of oddi dysfunction. It's not severe but it is problematic and having an affect on my life. I'm scared and not sure where to go.

I have experienced almost everything you talk about. I had stents put in my pancreas 2 years ago and it helped for a while but now the pain has returned and we are considering removing my gallbladder but it still might be the sphincter of Odi again…the whole process is indeed frustrating. I too look well all the time but no one sees me writing in my bed at night.

no one’s believing me they just giving me pantaprozel …im in sevre pain its not reconised in uk thats the docs say i cant cope any more i really cant

I’m sad Charlotte hasn’t added to this video! What has happened Charlotte? Did you have the surgery? Did they clip your sphincter?

Any updates please

Did it ever get better? Had mine out 3 weeks ago and am starting to experience a mild version of this

After severe pancreatitis, gallbladder surgery, pain and more pain, trips to my GP and to the ER, my ER doc said today that he suspects SOD and is sending me to a gastroenterologist. I've been going through the same things - images look fine, blood work hasn't shown anything definitive since the pancreatitis - so it's "all in my head." Thankfully today's doctor knew about this disorder. I'm afraid of the possible wait I will have to see a GI doc because the pain does get very disabling at times. Narcotic pain killers (oxycodone, percocet, and dilaudid) are the only things that help but I've experienced a lot of complications from those as well. It's very scary. I've been sick for two months straight - spending over 95% of my time in bed. I suffer from anxiety, depression, and PTSD as well and everything is being triggered and I haven't been dealing with it very well. It was a relief to finally get a direction today and it really helps to hear your story. Thanks.

I've had this extreme pain after taking codeine, the docs told me my body doesn't support it. Glad I'm not the only that's been through this. This pain is immeasurable I wished I died. It feels like your pancreas is getting larger and larger and it's also blocked from expanding at the same time and it creates such a pain. I couldn't even breathe, talk, walk, think 'cause the pain was so intense I tried to cry but I couldn't I was in so much pain. I'm lucky because I know that this is caused by drugs containing codeine so I just wont take them in the future. But damn some people live with that diabolical pain on a daily basis? That is crazy as I said I wish I died 'cause the pain was too much.

This IS me!! Thank you so much for sharing your story. I'm not alone or crazy. I'm scheduled for a Sphincterectomy after 3 YEARS of searching. I wish you all the best. ❤

Could you pinpoint exactly where it is in your body? I can point exactly to a specific spot that it starts at and then radiate out

Please tell me who is this doctor maybe he know someone in the US.. Same damm story here i need a doctor who listens. I'm in Alaska so good luck finding someone here. You 100% described me perfectly. What pain meds work if any i don't know what to do. I don't instagram or anything sorry I finally have hope though I'm not going crazy

Hi Charlotte....I watched your video on my kitchen floor at 2am bawling my eyes out. I have been to the hospital 8 times in 6 months and most of them have been in the past 2 months. I had my gallbladder out 3 years ago, but the pain only started 6 months ago. I feel like I am dying. The pain is worse, way worse than the gallbladder and kidney stone surgeries. When they asked me last time in the ambulance to rate my pain out of 10 I said 1000. The time before I passed out and last time they had to give me laughing gas in the ambulance. I had 3 nurses tending to me as I was screaming, biting my fingers, punching my legs, banging on the hospital bars, crying, moaning. Each time it is the same: diarrhea, I have been nauseous every day for months now, sweating profusely, hyperventilating, bright red on my face, shaking, dizzy, can't catch my breath and pain that is inhuman. I can't live like this anymore. I live in Vancouver Canada. I have had every test and all come back normal. Well I say you have not done every test, as I still am in agony. I found out today the GI specialist I was referred too says I don't need to see her. They have done every test. I called the office crying and begged them to have her call me for 5 mins. Also there is such a shortage of GI drs here that the wait can be up to 2 years. I will not survive that long. I am on strong meds very strong and sometimes they help a little and other times absolutely nothing. I know this is what I have. My pain is the top right hand side and I had my gallbladder removed. The last time the ER dr saw me I was severe. She told me when I was feeling better that she doesn't remember ever seeing anyone in so much pain. She said it saddened and concerned her. Then she sent me home. In the past 2 months I have had to be admitted into the hospital for 6 days both times. Help me please. Are there Drs that specialize in this? My brother is a Dr and he said they have to be sure of the diagnosis before starting treatment. I tried to find you on instagram and couldn't. I tried _cljxo. Oh and the dr treating me in hospital told the GI specialist over the phone that he thought I had SOD and they said no it is too rare. It has a name so it is not that rare. Google stories about lots of people all over the world who have it. I am so incredibly frustrated and tired. Also I have been sleeping a lot recently, unless I am gaining an attack and then I can't sleep at all. I have a permanent hospital bag and clothes ready to go if I need too. Thanks for this video. Much appreciated. I hope you have relief soon.

Are pancreatic and liver enzymes always elevated with Painter of Odie? My labs are normal but I’m having pain under my right rib and it’s mild but it radiates to my back. Had my gallbladder out last year.

I definitely have solid or gastroparesis I can't tell which

I haven't had my gallbladder out but this pain has been going on for me for six years they cannot give me an answer but all they've ever done is endoscopy colonoscopy with absolutely no results or answers. You described my pain so well, so what do I need to do next I'm nauseous just sitting here

Hi charlotte, I’m late to this but I’m going exactly through what you’re describing here. I’m so unbelievably terrified. Same thing happened with morphine at the hospital yesterday, did ultrasound and ct scan and everything is normal. I hope you’re doing better ❤

Any update?

Tooķ 13 yrs for mine to be finally suggested as a diagnosis That's a long time cos pain stops time and makes you feel like you're more alone than you could even imagine and no one hears your voice when you try speak and no one sees in your eyes how much life disappears from you when pain is in the driver's seat!

I got this after my gallbladder removal ...its a surgical injury Then i had more suries to correct multiple urgical "errors"....i was early 20s, now 42 STILL SEVERELY IN PAIN. Im to explain it easily, on pharmaceutical palliative management...ie: pain control for life which also allows ke to absorb nutrients better and have ANY quality of life!!!! The pain is AS bad as 43 hrs natural childbirth which ive done so I CAN compare the two. Its just qith SOD theres no reward at the end! Tektites for making this. I spent most of my life with medical gaslighting!!!! I bearly offed myself because I had no quality of life left . Pls update us hun Also the volume completely dropped off at the end of the video . Hope you make more truly!!! Ìts a rare illness but we need faces for this disease! I might even make a video myself because I have FOUR surgical injuries that all cause 11/10 painfrom a "sImPle" gallbladder removal!

You poor thing. My friend has been diagnosed and I'm researching. Your vid is really informative. Thanks.

Damn all my family is telling me to get my gallbladder out. I have no pain when i eat non fat foods. Now in thinking of not going through it and just becoming a vegetarian. I do not want to get SOD. What do you think?

Sunday, April 23, 2023. Hello Lady😊..I'm in the U S(America) I'm experiencing some Gastro issues as well...the topics of the Spincter did come up... But this is my first time having such and unusual form of gastroil issues that I have experienced prior in my life over the last 30 something years... the radiating pains and sharp stinging/ stabbing pains are a 1st for me. I'm in my beginning stages of gastro care and as I progress toward healing and ideas that they show me I would be honored and privileged to share with you so that you too can be healed... I know that I'm comfortable feeling of the pain and the stinging and not being able to sleep I've been there. But I will surely keep you posted on this journey of healing as you do for me…. dot. By the way my love. I'm praying for you hoping that we can stay in touch blessings until we chat again❤❤❤🙏🙏

I was diognosed with SOD yesterday..im still scared of being treated like a liar or drama queen because thats how ive been made to feel in the past about the pain xx

It's actually given me immediate relief to try to throw up--gently tickle back of throat to create the gag reflex. Sometimes I throw up, other times I don't but somehow this makes that sphincter relax and bring immediate relief. There's another video by william explaining ALL the reasons we might get this. Don't let them rip out your gallbladder--a doc tried to do that, but couldn't really prove my GB was sick. I got out of the hospital in tact. My friend had her removed and has had digestive issues ever since. We will all help each other. This guy covers it all!! kzbin.info/www/bejne/bWG7ZJ6CZreZpJo

Charlotte-Louise Jones when you have an episode of pain, does it feel like squeezing pain that comes in waves where its intense,, then eases over and over again? I think I have SOD.

I feel so bad for you! I also had similar issues. I woke up with the same pain you described, had my gallbladder removed out five days later I started feeling fatigue, went to the Dr. He said I developed a pseudo cyst. Waited three months for the surgery because my lnsurance didn't cover it unless it ruptured I had major surgery I've never been the same, I have digestive issues all the time . But I'm alive thank God. I'll be praying for you sweetheart

I described the pain like if flaming shards of flamming glass were being pushed through my abdomen. I shook and trembled and burp over and over again. My body was soaked in sweat and my heart would pound. Even the muscles in my thighs were twirching when the attack started. It was wild and terrifying. Back pain and even burning in my joints. And it mostly happens at night when im sleeping. But occasionally during the day. And after my attacks pass i will get horrible heartburn for a short time. I had my first attack after taking a opioid medication 3 days after having my gallbladder out.

Really would love a update on how you are going

THANK YOU Charlotte! I just had an episode at the emergency room with the morphine debacle & have been SEARCHING for answers & feeling alone. My gallbladder was removed almost 25 yrs ago but for the last 4 yrs I've had unexplained bouts of pain & experiences very similar to yours (& others here) but none of my treatment team has been able to pinpoint the problem ( I also have Multiple Sclerosis) so, a lot of times I'm dismissed with transient symptoms that wax/wane. Thank you so much for posting your story & encouraging the fact that we often forget...WE know OUR bodies better than anyone. Blessings to you!

In 2010 had GB after going to ER with N/V. Never really issues that i knew of prior. 4 days after surgery I had my first SOI attack. I thought I was having a heart attack. Tests tests tests. Given nitroglycerin which made me feel awful. Realized peppermint oil in with nitro spray. Now when I feel the attack coming on i rub peppermint oil all over my abdomen and inhale from hands. And have whoever is nearby stick elbow in upper right shoulder blade area where my pain refers. Works same as nitro without the side effects. Know red wine triggers me. I was also suspecting opioids which I take prn. Will have to monitor for that. Great info in the comments. I have no trust in allopathic medicine after last few years so looking for more holistic ways to treat my various issues. Cheers to better health for everyone.

I also had my gallbladder removed on April 20, 2009 and then the pain started from the sphincter of oddi.

This may sound crazy but a banana is the only thing that helps me with the pain for sphincter of oddi disorder. I have taken the strongest pain medication and nothing helped. Somehow I stumbled on eating a banana when the pain started and it went away so when it came back again I ate a banana and again it took the pain away. So my trick for my pain to go away is a banana

I just found out that magnesium citrate can completely stop Sphincter of oddi pain an keep it from coming back. Two in the morning an two at night. If it causes you to go to bathroom too much the ease up on the dose a while. Hope this helps because I well know the pain. Just got mine 30 minutes ago an it feels like it’s starting to ease.

desperate right now. The pain I get I can't describe . Had my gallbladder removed 3 years ago. Ever since then, when I take my pain relief for my other health problems. I have severe attack of pain in middle of chest where my scar is from the surgery. My pain relief is Co codamol. And oramorph when my pain is severe. But when I take that pain relief makes me have these severe attacks that last about 20 to 30 minutes . Pain in chest. Shoulder. Sore throat mouth goes dry. and then sounds like ive got a cold. And feels like can't breath. All in 20 to 30 minutes. So I googled to see if anyone else had problems. And came across your videos. Also my liver levels are coming back really high. But I havnt actually sat with the doctor and talked about any of this I've just been dealing with it alone . Are any of my symptoms the same as yours ? Please help 😪

I most probably had a bile duct spasm because of pain medication (damn wisdom teeth to hell) and was really interested at what was happening because the gallstone type of pain when I've had gallbladder removed. Came accross the Oddi sphincter and now I'm thinking if that might be the reason why I have random liver entzyme rises. I've luckily had the really painfull "attacks" only couple of times, but atleast I now know to keep away from codeine and such. Thank you for sharing your story! Hope you've had some easing in ur symptoms.

I have this too. My best advice is magnesium in powder form. Magnesium Capsules as a preventative. The worst pain ever.

Thanks 4 this x i had my gb out 2yrs ago bit im still in awful pain under my bra strap area.Heptobil spclst thinks it may be SOD level 3 but meds cause severe side effects so i cant take them! Im barely eating cos of the pain & dont know what to do.A&e dont do anything ive bn b4.Medics r useless they just blame evrything on mental health.if anything the nhs have made me more ill.ive already spent the last 15yrs of them misdiagnosing my hip dysplasia so im done with them. Then ive had ths gut hell for 6yrs x

I had an ERCP one year ago and no pain since. The Dr had to cut open my sphincter of Oddi. I still have my gallbladder. The pain prior was terrible. My bile and pancreatic ducts and gallbladder were all dilated because bile and pancreatic juices could not flow into my intestine.

Wow this has got to me as av done same for the past 6 year tell me it my gold bladder had it removed them having same pain put they said it cuz they left an stone in my boie buck n know say they think it sphincter of Oddi dysfunction are liver cancer am really worried my day to day live chances am know watching on and HIDA scan xxx

Your story is EXACTLY what I have been going through since 2019 😭😭😭 I had an ERCP done yesterday and had a stent put in and was also cut I’m hoping and praying that this is the fix to everything I’ve gone through

I have biliary dyskinesia and had gallbladder out! And I hear you! People treat you like your nuts and a hypochondriac! I have symptoms like yours but no one will tell me I have SOD 🥴