Horrible abdominal Pain- all tests say I am fine but I am not

Posted by jojo13 @jojo13, Sep 1, 2021

I am new here and hoping you guys can help. I have had horrible abdominal pain for weeks now, once it was so bad I was on the floor crying. It is almost like a burning, gnawing feeling. It is in my abdomen and down by my hip bone- so more pelvic I guess. I am bloated and nauseas most of the time. I wake up with the pain and it can last all day. It ruins my day to day life. I had an endoscopy and a colonoscopy yesterday and both came back fine. I was told to go home and eat better. This morning I woke up in terrible pain and it has not let up all day. I know my body and something else is wrong, not just diet. There are also horrible noises that come from my stomach all day which I have been told is IBS but this pain can not be just IBS. Does anyone have any insight? I am thinking of going to the Mayo Clinic but don't know what tests they would do. Perhaps there are some blood tests I can get done on my own? Any help would be awesome. I just want to feel better again and not like I am crazy. I am a female 41, 5'4 and 127.

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Profile picture for laura1970 @laura1970

@rashida I will definitely try it! Thanks 🙂

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@laura1970 I’d be interested to know if it works for you, too! 😀 Another thing I do is imagine tasting something sour, like a lemon.

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Profile picture for loriesco @loriesco

If you have a temperature then go to urgent care oremergency room. It sounds like an appendix, gallbladder, diverticulitis, or a kidney stone. A temperature will tell you it is an infection making you miserable and it’s getting dangerously worse. If you do not have a temperature, then it could be the IBS and if you change your diet immediately, it will stop the pain. It’s very easy to tell if it’s the IBS making you miserable. Start the FODMAP diet by the Monash university. It is free just Google and go to their site. If you don’t have time to figure the diet out, just eat white rice and white chicken meat ONLY for a couple days. If you can figure out the other safe foods to start with. I think banana orange cantaloupe. Spinach are OK. That will tell you for sure if it is the IBS, which is causing your nightmare. I had two gastroenterologist who ran all the tests and I felt like I was dying. I went to two dietitians as well and they made it worse by putting me on some crazy kind of diet. The FODMAP was not recommended. I don’t know why. But it turned out that my digestive system and intestines had failed and eating regular food became impossible. I didn’t wanna believe it, but that’s what it was. I had to give up garlic, onions and all foods with “inulin.“ I know what the hell is inulin? It’s a non-digestible cellulose like the strings in the celery. Turns out there’s a lot of it in the foods I eat. It also turned out. I was intolerant of lactose and gluten. It only took me 48 hours of eating, the white rice and chicken ( actually overnight I felt better.) it took me a year or two to realize I had to stay on the diet, but you expand your foods to realize what causes problems. It took four years to heal my digestive track and intestines now seven years out I can eat a little bit of the problem foods without dying. It took me a couple years to accept that my body would no longer digest foods that everyone else can eat. No medicine I found substitutes for everything (scallions green onions instead of onion essence of garlic instead of garlic, fermented cheeses, fermented alcohol sourdough extra fermented bread) if you have a temperature you must pursue this so the infection doesn’t threaten your life. Don’t delay eithe way! I just saw the date on this. I guess let us know if you got it figured out.

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@loriesco It took forever for my pain to be diagnosed as diverticulitis. All the doctors doing colonoscopy said they got all the way up through the transverse colon. No one did, but the last doctor, and by then, (literally years) I needed surgery. You are VERY right about getting help immediately...especially if there is a fever. It could be any of the things you listed. So glad you are doing better! What a long journey. You are tenacious for sure ❣️

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Profile picture for helendances @helendances

I'm sorry that you all are dealing with such pain. I have different types of pain, but one thing I've been able to do was find and adopt a few tools to communicate "better" with doctors. I put better in apostrophes to indicate that it's a relative "better" - taking on some of their language rather than bringing them to yours.

One is I found this pain scale - I like it because a numbers only scale never worked for me. It uses words to describe the pain, using concepts related to what's called "activities of daily living" - https://myhealth.alberta.ca/Health/pages/conditions.aspx; I print it out and bring it with me to the doctors appt so they can see what I mean.

In other words how is it affecting your ability to conduct your life. Things to consider are nicely discussed here: https://www.eastridgeatcutlerbay.com/2024/01/19/what-are-iadls-vs-adls/

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@helendances -- link is broken; can't be found, however is takes you right to a rental/sr living place.

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This post is to no one in particular but I don't believe i have seen it referenced.
For years after a small abdominal wall injury, which needed surgical repair but which did not happen for 6 yrs ( became a huge medical condition). Long story short, despite recovering from this small surgery i have spent years in crippling extensive abdominal pain, which ultimately traveled to my spine, leading to a spinal cord stimulator (which i shd not have received and that caused whole host of other horrible problems) I am finally after 17 years diagnosed with CELIAC PLEXUS P AIN.
It's a large nerve bundle near the Aorta. You can have scan/ test after test and nothing will EVER show. To the Medical Profession you become a hypercondriac and a plain nuisance, when in fact you suffer very severe, debilitating pain.
I haven't seen anyone mention this, so thought it might be useful to someone one day. I waited 17 years in agony for a diagnosis. The pain is Epigastric, near the sternum, sharp, stabbing , burning etc.
Just a suggestion for those who's tests repeatedly show nothing. It also makes eating painful/ causes bloating, IBS type symptoms.
If you are in PAIN never give up. I have been labeled delusional, paranoid, anxiety riddled, malingering , attention seeker, etc etc.
My pain is REAL, and now im being heard. Best of luck to everyone.

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You should be checked for diverticulitis. I was diagnosed with diverticulitis 2 years ago after a few years of intermittent unexplained abdominal pain. It was dicovered during a routine colonosopy. For me it's not real bad but I think eating red meat causes flareups. Best wishes .

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Profile picture for anniesezu812 @anniesezu812

This post is to no one in particular but I don't believe i have seen it referenced.
For years after a small abdominal wall injury, which needed surgical repair but which did not happen for 6 yrs ( became a huge medical condition). Long story short, despite recovering from this small surgery i have spent years in crippling extensive abdominal pain, which ultimately traveled to my spine, leading to a spinal cord stimulator (which i shd not have received and that caused whole host of other horrible problems) I am finally after 17 years diagnosed with CELIAC PLEXUS P AIN.
It's a large nerve bundle near the Aorta. You can have scan/ test after test and nothing will EVER show. To the Medical Profession you become a hypercondriac and a plain nuisance, when in fact you suffer very severe, debilitating pain.
I haven't seen anyone mention this, so thought it might be useful to someone one day. I waited 17 years in agony for a diagnosis. The pain is Epigastric, near the sternum, sharp, stabbing , burning etc.
Just a suggestion for those who's tests repeatedly show nothing. It also makes eating painful/ causes bloating, IBS type symptoms.
If you are in PAIN never give up. I have been labeled delusional, paranoid, anxiety riddled, malingering , attention seeker, etc etc.
My pain is REAL, and now im being heard. Best of luck to everyone.

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@anniesezu812
Yes!!! I used to get about 4-6 months relief from splentic nerve ablation, until other issues took priority. I haven’t found anything else to significantly reduce the pain.

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Also, SIBO (small intestine bacterial overgrowth) can cause a lot of pain and GI symptoms. And, endometriosis rarely shows on imaging and for me, the pain got progressively worse with age.

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Profile picture for nifty50co @nifty50co

@anniesezu812
Yes!!! I used to get about 4-6 months relief from splentic nerve ablation, until other issues took priority. I haven’t found anything else to significantly reduce the pain.

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@nifty50co
I never met anyone who had it. Pain Dr wants to do Celiac Block...i'll look into the splenic nerve ablation...Celiac Block seems major.
Did you find it worth it...good pain reduction??

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Profile picture for whatever999 @whatever999

You should be checked for diverticulitis. I was diagnosed with diverticulitis 2 years ago after a few years of intermittent unexplained abdominal pain. It was dicovered during a routine colonosopy. For me it's not real bad but I think eating red meat causes flareups. Best wishes .

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@whatever999 Thanks for heads up, I think my pain is wrong but am due colonoscopy, will check with Dr.

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Profile picture for janwalsworth @janwalsworth

@helendances -- link is broken; can't be found, however is takes you right to a rental/sr living place.

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@janwalsworth
I'm not sure what happened with the link. I found another posting of the material here (November 30th). I found it by searching "adls vs iadls whats the difference"
https://www.mooringspark.org/news/adls-vs-iadls-whats-the-difference

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