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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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jojo13 | @jojo13 | Sep 13, 2021
In reply to @fourof5zs "@jojo13 Since you have had those surgeries you should definitely be checked out by your gynecologist..." + (show)
@fourof5zs

@jojo13
Since you have had those surgeries you should definitely be checked out by your gynecologist too.

A few years back I had low pain on my left side.. lower than my occasional diverticulitis. I did get checked out by a gynecologist and he ordered a CT scan and it showed the diverticulitis and wall thickening. I thought it could be something to do with the hysterectomy I had many years ago. Sometimes the symptoms are confusing to me. When you think it is one thing it is another or more.

ZeeGee

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I totally agree- it is confusing to me too! I think I will make an appointment with my gynecologist also. Thank you!

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jojo13 | @jojo13 | Sep 13, 2021
In reply to @peggyjean "Maybe gastroparesis that can be detected by a gastric emptying test! I do have this &..." + (show)
@peggyjean

Maybe gastroparesis that can be detected by a gastric emptying test! I do have this & am lactose intolerant, both can be very debilitating. Small frequent meals with no raw foods or beef, except ground meats, and of course no dairy. I have to walk after every time I eat for at least 10 minutes. Prayers for Comfort & Answers.🙏❤️🥰

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Peggy I am not familiar with gastroparesis but I am going to go look it up right now. Thank you. I hope you are having a good day today.

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1 reply
wishingtobepain | @wishingtobepain | Sep 13, 2021
In reply to @kenc "I have had a couple of surgeons recommend not removing scar tissue to just attempt to..." + (show)
@kenc

I have had a couple of surgeons recommend not removing scar tissue to just attempt to relieve pain, because more than likely, just as it happened before from the previous surgery, the scar tissue returns. However, none suggested alternatives.

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Agreed. Certain circumstances require removal, but overall I would not do again. They never tell you about scar tissue when you get cut open.

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peggyjean | @peggyjean | Sep 13, 2021
In reply to @jojo13 "Peggy I am not familiar with gastroparesis but I am going to go look it up..." + (show)
@jojo13

Peggy I am not familiar with gastroparesis but I am going to go look it up right now. Thank you. I hope you are having a good day today.

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I am a patient of Mayo Clinic & their facilities are the best! I’ve been to the one in Rochester, Mn. numerous times & also Jacksonville, Fl. Continued Prayers For Answers & Comfort…..🙏❤️

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 14, 2021
In reply to @jimhd "@jojo13. I just got out of the hospital because I was having terrible stomach pain. I've..." + (show)
@jimhd

@jojo13. I just got out of the hospital because I was having terrible stomach pain. I've had several previous surgeries, and the first test, after labs, was a CT, which seemed to indicate a bowel obstruction. After 4 days, I was finally transferred to another hospital with a higher level of care, as well as the surgeon who worked on me 10 years ago. I went straight to surgery, and he found and repaired a ton of scar tissue. I don't do well post surgery, so I was pretty much out of it for the next ten days. Now that I'm back home, I'm transitioning from the full liquid diet to soft regular food and the pain is gone (until the next time).

Previous surgeries included a 45" small bowel resection, a toxic mega colon, peptic ulcers, and at least 3 bowel obstruction. It's no wonder there was scar tissue!

I agree with what others have said. What you're experiencing could be very serious and not to be ignored.

I hope you have found a doctor who has taken you seriously and is acting professionally.

Jim

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@jimhd Hi Jim, I'm so sorry to hear of your hospitalization and surgery. I'm glad that you found a good hospital and doctor. I'm glad to hear that you are home from the hospital. I hope that your recovery goes well!

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edda | @edda | Sep 14, 2021

I have almost the same problem like you and I also have been told, that everything, like blood tests, CT scans, colonoscopy and endoscopy looks normal. I have been to the local ER three times,
and they could not find something wrong.
I am taking pain meds for my bad back and sometimes my husband thinks, that is what causes my stomach pain, by being constipated
most of the times.
I also have no appetite and the pain is going to my throat and throat sometimes.
I was also thinking of going to the Mayo Clinic in Scottsdale, because I will be seen by several doctors at the same time.I am seeing now several doctors and that is not the best way to get to the bottom of my severe pain.
Luckily my heart and blood pressure is great, and I am 5’8 and weigh
143 pounds. So that is one good thing!

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juliepm | @juliepm | Sep 14, 2021

Anyone with prior abdominal surgery who has severe pain and a bunch of negative tests: Get Carnett's test ASAP! It is very possible to have nerve entrapment, especially if no other testing is significant. Carnett's test is simple and straightforward--I even diagnosed my own severe abdominal pain that had been dismissed for 3 years because no physicians knew that abdominal WALL nerve entrapment is significant cause of "abdominal" pain and don't know about Carnett's to help diagnose it. Don't go chasing rare possibilities until abdominal wall pain is ruled out!

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1 reply
jgroudan | @jgroudan | Sep 15, 2021
In reply to @juliepm "Anyone with prior abdominal surgery who has severe pain and a bunch of negative tests: Get..." + (show)
@juliepm

Anyone with prior abdominal surgery who has severe pain and a bunch of negative tests: Get Carnett's test ASAP! It is very possible to have nerve entrapment, especially if no other testing is significant. Carnett's test is simple and straightforward--I even diagnosed my own severe abdominal pain that had been dismissed for 3 years because no physicians knew that abdominal WALL nerve entrapment is significant cause of "abdominal" pain and don't know about Carnett's to help diagnose it. Don't go chasing rare possibilities until abdominal wall pain is ruled out!

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To follow up your good advice one needs to get a trigger point shot in that area. If you get relief (temporary) it not only confirms ACNES but it should cover you insurance wise for surgery. You need to find a pain doctor who if familiar with ACNES.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 15, 2021

@juliepm is quite right. Thank you for making people aware of Carnett's sign.

Carnett's sign is simple a diagnostic tool used at Mayo Clinic and elsewhere. Here's an article from The American Journal of Gastroenterology
- Carnett's Sign: An Easy Tool That Saves Unnecessary Expenses in the Evaluation of Chronic Abdominal Pain https://journals.lww.com/ajg/fulltext/2017/10001/carnett_s_sign__an_easy_tool_that_saves.1403.aspx

Learn more from Mayo Clinic gastroenterologist, Dr. Amy Oxentenko. She talks about the complexities of chronic abdominal wall pain (CAWP) – a condition that seems elusive to any workup.

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jgroudan | @jgroudan | Sep 15, 2021

Sounds like ACNES. I just had Robotic Laparoscopic surgery 9/2/1 in Phoenix. Feel great again. Thank God for Dr Gillespie and his team.

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