Chronic Abdominal Pain | Normal Test Results

Posted by amandaleigh @amandaleigh, Oct 5, 2022

Hello—My partner has been experiencing lower right abdominal pain since 2017 with no relief. He says it is more or less noticeable throughout any given day, but no single, specific cause can be pinpointed that impacts it (i.e. the pain doesn’t worsen after eating, or when eating specific food.) He describes the pain as if a ball was inside, and there is something that he wants to “rip out.” Laying on the opposite side sometimes provides some relief and he tends to feel it more at night when laying down.

We’ve had CT, ultrasound, Colonoscopy, SIBO “breath test,” full blood work up and everything has returned normal/unremarkable results. He was referred to a pelvic floor PT, but has not had any relief. We’re at a complete loss about where to go to next. I’m hoping someone has experienced something similar to provide us with suggestions. We don’t know what other specialist to see, or tests to be done. I’m afraid there is something genetic or a rare illness that is being overlooked.

Sincerely appreciate any insight and/or support folks are able to provide.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

I have no idea ,none, if this will be helpful, my sister suffered with pain on her left side as you describe. After MRI, CT, x-rays, blood work etc no relief. She had to have her esophagus stretched, the DR decided to look around a bit, when he did, he discovered something called a Gist Tumor, these are fairly uncommon. Unfortunatly hers is cancerous, good news is Ct shows nothing has spread to other organs. I know this may sound strange but these types of tumors are hard to find. The Dr was stunned, after all she had had problems for over 2 years. Please remember this is just a thought, it stunned all of us too. I do not meant to scare anyone just know I wish you and your partner well.

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Hi Amy,
It sounds like your partner is suffering from Abdominal Cutaneous Nerve Entrapment Syndrome (ACNES). The two ways to confirm this is 1) the Carnett test and 2) a trigger point shot. If it is confirmed ACNES the only way to rid oneself of this horrible pain is through a procedure where the nerves are cut. Unfortunately not only are almost all doctors unaware of ACNES but very few in the country do this procedure/surgery. I was most fortunate to find a surgeon in Phoenix who performed Robotic Laparoscopic surgery cutting my T8, T9 and T10 abdominal nerves. It is outpatient and went home that afternoon CURED. This was 9/2/21. The surgeon's is Dr Thomas Gillespie at St Joseph's Medical Center in Phoenix. He does take new patients. I have referred several people that were on this website to him and I am happy to say they all finally have their lives back. You need to go online and familiarize with the Carnett test and trigger point shot first. There are great articles and youtubes to watch. I'd be happy to discuss further via a phone call if you are interested. Jeff in Gilbert AZ

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@amyj2022

I have no idea ,none, if this will be helpful, my sister suffered with pain on her left side as you describe. After MRI, CT, x-rays, blood work etc no relief. She had to have her esophagus stretched, the DR decided to look around a bit, when he did, he discovered something called a Gist Tumor, these are fairly uncommon. Unfortunatly hers is cancerous, good news is Ct shows nothing has spread to other organs. I know this may sound strange but these types of tumors are hard to find. The Dr was stunned, after all she had had problems for over 2 years. Please remember this is just a thought, it stunned all of us too. I do not meant to scare anyone just know I wish you and your partner well.

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Where did the doctor find the gist tumor
What area ?

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Hello @amandaleigh, welcome to Connect! I'm happy you found us to ask these important questions regarding your partner's condition. Having abdominal pain since 2017 must be quite frustrating by now, not to mention uncomfortable.

You mention blood testing, has there been a genetic work up or testing for auto immune? Does he get flares of pain or stays steady? You say there are no defined triggers such as food. What about exercise? What sort of physical activity does he do?

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@rwinney

Hello @amandaleigh, welcome to Connect! I'm happy you found us to ask these important questions regarding your partner's condition. Having abdominal pain since 2017 must be quite frustrating by now, not to mention uncomfortable.

You mention blood testing, has there been a genetic work up or testing for auto immune? Does he get flares of pain or stays steady? You say there are no defined triggers such as food. What about exercise? What sort of physical activity does he do?

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Exercise/stretching doesn’t impact it either. He lifts weights and walks regularly. Nothing seems to make it worse or better. The pain fluctuates in intensity. No genetic testing yet, but I think that may be the next step. We’ve spent thousands of dollars for each doctor to tell us there is “nothing wrong.”

One additional thing that may be unrelated is he tends to lose weight/muscle mass easily. If he doesn’t work out, he loses weight quickly (too bad it works the other way for the majority of us!)

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@jgroudan

Hi Amy,
It sounds like your partner is suffering from Abdominal Cutaneous Nerve Entrapment Syndrome (ACNES). The two ways to confirm this is 1) the Carnett test and 2) a trigger point shot. If it is confirmed ACNES the only way to rid oneself of this horrible pain is through a procedure where the nerves are cut. Unfortunately not only are almost all doctors unaware of ACNES but very few in the country do this procedure/surgery. I was most fortunate to find a surgeon in Phoenix who performed Robotic Laparoscopic surgery cutting my T8, T9 and T10 abdominal nerves. It is outpatient and went home that afternoon CURED. This was 9/2/21. The surgeon's is Dr Thomas Gillespie at St Joseph's Medical Center in Phoenix. He does take new patients. I have referred several people that were on this website to him and I am happy to say they all finally have their lives back. You need to go online and familiarize with the Carnett test and trigger point shot first. There are great articles and youtubes to watch. I'd be happy to discuss further via a phone call if you are interested. Jeff in Gilbert AZ

Jump to this post

I actually came across this a few months ago. I’m unsure of what specialist can test for this accurately.

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@amandaleigh

Exercise/stretching doesn’t impact it either. He lifts weights and walks regularly. Nothing seems to make it worse or better. The pain fluctuates in intensity. No genetic testing yet, but I think that may be the next step. We’ve spent thousands of dollars for each doctor to tell us there is “nothing wrong.”

One additional thing that may be unrelated is he tends to lose weight/muscle mass easily. If he doesn’t work out, he loses weight quickly (too bad it works the other way for the majority of us!)

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Yeah, that's difficult to know just how far you keep reaching and how much more money you want to invest.

How about stress, anxiety or fatigue? Do either bring on a flare of intensity? Does he have gut issues or IBS? Does he have any other symptoms or odd feelings anywhere else throughout his body? Sorry for the 1,000 questions, just trying to troubleshoot.

I'm wondering if it could be neurological. Has he ever had surgery or experienced a traumatic event? Sometimes such things can cause an upregulation of the central nervous system resulting in a process called Central Sensitization Syndrome. CSS can be symptomatic in one area or several causing muscle, joint, bone or nerve pain and sensory issues. It might be worth exploring.

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@amandaleigh

I actually came across this a few months ago. I’m unsure of what specialist can test for this accurately.

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You can perform the Carnett test yourself. Lie on your back on a hard surface. Head to toe on the ground. Now, lift just you legs up in the air. If you feel worse pain it is ACNES (you can google this on youtube). Then you need to find a pain management clinic that has some familiarity with ACNES. They should inject lanacaine into the sore area (trigger point). That will confirm enough to go to a surgeon like Dr Gillespie to review your case so hopefully to perform the procedure.

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@amandaleigh, you might also be interested in the tips in this related discussion:
- Lower right abdominal pain: https://connect.mayoclinic.org/discussion/lower-right-abdominal-pain/

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@johanne56

Where did the doctor find the gist tumor
What area ?

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It is in her stomach, the pain was on her left side, not always constant until lately.

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