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.

@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

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Dear Jeff
Thanks for this post! I have had pain in upper right quadrant for 12 years since my pregnancy ! It was excruciating during pregnancy and all sorts of gi issues too! Recently I had a nerve block by pain management on right side of abdomen but not directly at point of pain! My pain is a spot right below rib cage on the right side toward middle and strong palpating near pain and I feel my heart palpating too. It is painful when pressing on that one area! Does this sound like what you had? It just always felt like I just wanted to remove that one area! I did have a positive carnet test by my liver dr at Brigham and women’s hospital in Boston recently ! In addition I also have itchiness and dermatologist thinks it is nerves too! I was thinking of scheduling appt at Mayo Clinic ! Is that where you had your surgery? Thanks for all your feedback as I have been dealing with this for so many years and now I really think it is a trapped nerve that needs surgery !

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You may want to check the spine with a MRI to see if something is compressing the spinal cord or peripheral nerves linked to the abdomen. The thoracic or lumbar spine may have impacted pain signals and communication to the lower right abdomen. You may also want a neurologist to do some testing (small fiber neuropathy punch biopsy, EMG lower, etc.). Good luck!

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I am experiencing the same pain, and have had most tests, including ECP at UC Irvine. Nothing found, and I hardly eat or drink, only water most of the time. Anybody have a suggestion ?

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Hello, I am new to this, but I came across this post while searching for answers to my chronic abdominal pain which is located in the upper right quadrant. I have had multiple abdominal surgeries over the past 15 years for a variety of reasons that all stemmed from a ruptured appendix with a bowel resection while 6 months pregnant. Since then, I have had multiple bowel blockages with 2 ending in bowel resections. I have also had 3 hernia surgeries one with mesh. The mesh caused all kinds of issues and finally had to be removed because of an open wound that would not heal due to underlying infection in the abdomen. I have been in chronic abdominal pain from the beginning off all this and it is getting worse. All tests are normal or inconclusive. I did have an adhesion removal in October which did not grant me any relief and I just had my gallbladder taken out a few weeks ago and I am still in miserable pain. No one can seem to find the cause for my pain. I completely relate to the comment of wanting to just go in and "scoop" out whatever is in there and that's exactly what I told my surgeon which led to removing my gallbladder. I am at a loss of what to do and who to see. GI says not them. Any information or thoughts on my situation would be greatly appreciated!

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@jenguin37

Hello, I am new to this, but I came across this post while searching for answers to my chronic abdominal pain which is located in the upper right quadrant. I have had multiple abdominal surgeries over the past 15 years for a variety of reasons that all stemmed from a ruptured appendix with a bowel resection while 6 months pregnant. Since then, I have had multiple bowel blockages with 2 ending in bowel resections. I have also had 3 hernia surgeries one with mesh. The mesh caused all kinds of issues and finally had to be removed because of an open wound that would not heal due to underlying infection in the abdomen. I have been in chronic abdominal pain from the beginning off all this and it is getting worse. All tests are normal or inconclusive. I did have an adhesion removal in October which did not grant me any relief and I just had my gallbladder taken out a few weeks ago and I am still in miserable pain. No one can seem to find the cause for my pain. I completely relate to the comment of wanting to just go in and "scoop" out whatever is in there and that's exactly what I told my surgeon which led to removing my gallbladder. I am at a loss of what to do and who to see. GI says not them. Any information or thoughts on my situation would be greatly appreciated!

Jump to this post

Hi @jenguin37, welcome to Connect. I'm sorry you're going through such difficulties with your abdomen. I can understand how you must be at the the end of rope by now. Scooping out your insides though, yikes! Have you been to any large teaching hospitals for second opinions?

Feeling chronic pain is tough enough, but adding the fact that testing is showing no evidence of why that pain exists is frustrating - been there, done that. I don't have experience with abdomen surgeries other than having an appendectomy, however, I learned that the residuals of surgeries can sometimes lead to central sensitization whereas even once an acute issue has been resolved, there remains pain from central sensitization.

Here's more about Central Sensitization Syndrome (CSS):

Very Well Health -
https://www.verywellhealth.com/central-sensitivity-syndromes-716160

Mayo Clinic's Dr. Sletten on CSS -
https://www.youtube.com/watch?v=vJNhdnSK3WQ

CSS is all I can think of regarding your unfortunate abdomen history and circumstances. My health journey and experiences with chronic pain that could not be explained or proven through diagnostic testing, is what lead me to learning about CSS and working with Mayo's Dr. Sletten. It might be worth checking out for you. Thinking outside the box, maybe??? I look forward to hearing back with your thoughts. Is it possible CSS resonates with your situation?

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@rwinney

Hi @jenguin37, welcome to Connect. I'm sorry you're going through such difficulties with your abdomen. I can understand how you must be at the the end of rope by now. Scooping out your insides though, yikes! Have you been to any large teaching hospitals for second opinions?

Feeling chronic pain is tough enough, but adding the fact that testing is showing no evidence of why that pain exists is frustrating - been there, done that. I don't have experience with abdomen surgeries other than having an appendectomy, however, I learned that the residuals of surgeries can sometimes lead to central sensitization whereas even once an acute issue has been resolved, there remains pain from central sensitization.

Here's more about Central Sensitization Syndrome (CSS):

Very Well Health -
https://www.verywellhealth.com/central-sensitivity-syndromes-716160

Mayo Clinic's Dr. Sletten on CSS -
https://www.youtube.com/watch?v=vJNhdnSK3WQ

CSS is all I can think of regarding your unfortunate abdomen history and circumstances. My health journey and experiences with chronic pain that could not be explained or proven through diagnostic testing, is what lead me to learning about CSS and working with Mayo's Dr. Sletten. It might be worth checking out for you. Thinking outside the box, maybe??? I look forward to hearing back with your thoughts. Is it possible CSS resonates with your situation?

Jump to this post

Thank you so much for taking the time to respond. I really appreciate you taking the time to share this information with me because in all my research I had not come across this as a possible reason for what I am experiencing. A lot of what I read definitely resonates with what I'm experiencing. I am going to go over this and the other syndrome mentions on this thread called Abdominal Cutaneous Nerve Entrapment with my current surgeon, but if he is not receptive to either then I will definitely be reaching out to a bigger hospital like Mayo or Cleaveland Clinic. I think it's possible I may be dealing with both of these simultaneously. I know something is going on and I am suffering and its definitely time to look outside the box.

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@jenguin37

Thank you so much for taking the time to respond. I really appreciate you taking the time to share this information with me because in all my research I had not come across this as a possible reason for what I am experiencing. A lot of what I read definitely resonates with what I'm experiencing. I am going to go over this and the other syndrome mentions on this thread called Abdominal Cutaneous Nerve Entrapment with my current surgeon, but if he is not receptive to either then I will definitely be reaching out to a bigger hospital like Mayo or Cleaveland Clinic. I think it's possible I may be dealing with both of these simultaneously. I know something is going on and I am suffering and its definitely time to look outside the box.

Jump to this post

You're welcome! Glad to hear you've got some things to process and you're willing to look outside the box. Being our own advocates sometimes is our best option, and following our gut (no pun intended) because we know our bodies best, right?

Here is a link to Mayo Clinic should you choose that route and want to apply:
- http://mayocl.in/1mtmR63

Do you have any large teaching hospitals near you?

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@jenguin37

Hello, I am new to this, but I came across this post while searching for answers to my chronic abdominal pain which is located in the upper right quadrant. I have had multiple abdominal surgeries over the past 15 years for a variety of reasons that all stemmed from a ruptured appendix with a bowel resection while 6 months pregnant. Since then, I have had multiple bowel blockages with 2 ending in bowel resections. I have also had 3 hernia surgeries one with mesh. The mesh caused all kinds of issues and finally had to be removed because of an open wound that would not heal due to underlying infection in the abdomen. I have been in chronic abdominal pain from the beginning off all this and it is getting worse. All tests are normal or inconclusive. I did have an adhesion removal in October which did not grant me any relief and I just had my gallbladder taken out a few weeks ago and I am still in miserable pain. No one can seem to find the cause for my pain. I completely relate to the comment of wanting to just go in and "scoop" out whatever is in there and that's exactly what I told my surgeon which led to removing my gallbladder. I am at a loss of what to do and who to see. GI says not them. Any information or thoughts on my situation would be greatly appreciated!

Jump to this post

Three years next month since mine started from a fall, which caused a concussion and a
detached retina. After surgery on my eye, I had to position hanging my head off the bed on the right side for three weeks. I could get up once an hour for 15 minutes and yet still had to hold my head to the side. My right side had had excruciating pain for 3 years now. When I fell I hit my ribcage on the upper waist and my cheek and ear. Multiple xrays, mri's, ct scans, bloodwork, inflammation test,
kidney, liver, colonoscopies (two the last three years), endoscopies, exploratory surgery, adhesions removed, liver cysts removed. I have seen Thoracic Surgeon, Gastro's, Neurologists,
several ER visits ( which they see me coming and they think I am crazy and treat me as such)
none of the Doctors take me seriously except for one Thoracic Surgeon and he is afraid
to treat the herniated disc at T8 and T9. These discs can cause abdominal and bowels issues.
I have researched this until I can't take it anymore. Here is my story. It was one day before
my Birthday. I had walked that morning two miles and felt great. I saw some Ivy taking over
one of my shrubs and stopped to pull it. I was on an incline and when I pulled it nothing happened. I planted my feet to get a good stance, I pulled again and it let go with a vengeance. As I stepped back to keep from falling, my tennis shoe hung on a concrete planter
positioned on my walkway, I turned and flipped over the urn, striking my waist and head on
the opposite planter. Two days later felt weird. Long story short, went to my Doctor, who
sent me for an Mri on my upper torso, nothing but bruising. They did not bother to look
at my head until I had the detached Retina and that was a month later. Since that time I have lived in Hell. I awaken every night around 2 a.m., excruciating pain in my waist under my
right rib cage. I am so nauseated I have to get up, I walk the floor holding my side, I feel
like I have a huge ball in the bowel, when my bowels move, it starts to ease somewhat; however I have had chronic constipation since the fall and nausea. over a thousand days of no sleep, chronic constipation, chronic nausea. Doctors on want to give you pills, not actually try to find out what is wrong. No one will listen, I have been everywhere and Doctors just do not seem to want to find out why I hurt. I am not depressed
good Cognitive skills, balance, but the pain is exhausting me. I do not know what to do,
no problems sleeping if I were not in pain. I sleep about 3 hours a night. I am bloated, tired, frustrated, constipated and can't lie on that side. I sleep with icepaks, heating pads and am just plain sick of it. I told
a Doctor that told me" you are just afraid of dying." No I am not afraid of dying, I am afraid
of living like this several more years. This is constant. I have no life. Tens machine helps sometimes, but other than that, nothing seems to help. I would love to go to someone that would observe what i live through every single night. I eat exlax
like Hershey Candy Bars. My guts hurt to say the least. As of right now, I have chronic constipation, liver cysts, chronic nausea, pain on the right side and when I push in on my waist, I wish I could take a knife and cut it out. I would love to go to the Mayo Clinic, when
this happened in 2021 the height of the Covid Pandemic, I took the shots which made it
worse. Tried to get an appointment in Jacksonville, but could not get in. Don't know if that had anything to do with it, but shortly after the shots is when i fell.
Shots put me to bed for a week, but thought nothing of it. I have since had Covid, Shingles and the Flu. Will not take another vaccine, don't trust them. I have enough going on without
more symptoms. Oh well, just the hand I was dealt, but awful strange many of these texts
sound like mine. Right now my go to, is Advil, Tens machine, Zofran and Prayer. Prayers for all of you, just wish someone had an answer. I have had epidurals to boot, even hip replacement and struggled with the pain. I hate pain meds, because they constipate me. No easy answers. Hang in there, you are not alone!

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@jenguin37

Thank you so much for taking the time to respond. I really appreciate you taking the time to share this information with me because in all my research I had not come across this as a possible reason for what I am experiencing. A lot of what I read definitely resonates with what I'm experiencing. I am going to go over this and the other syndrome mentions on this thread called Abdominal Cutaneous Nerve Entrapment with my current surgeon, but if he is not receptive to either then I will definitely be reaching out to a bigger hospital like Mayo or Cleaveland Clinic. I think it's possible I may be dealing with both of these simultaneously. I know something is going on and I am suffering and its definitely time to look outside the box.

Jump to this post

I was just going to mention ACNES, but you mentioned it here. Another similar/related condition is MALS (Median Arcuate Ligament Syndrome). I considered getting screened for both…I think they require a vascular ultrasound?

But as you mentioned, it would probably be best to seek out a specialist.

Turns out I also have central sensitivity syndrome—it can be triggered by any kind of chronic pain, especially when the original pain can’t get addressed quickly. The good news is addressing the CSS can usually improve symptoms of any other conditions you might have since you’re influencing pain perception.

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@20mnthssick

Three years next month since mine started from a fall, which caused a concussion and a
detached retina. After surgery on my eye, I had to position hanging my head off the bed on the right side for three weeks. I could get up once an hour for 15 minutes and yet still had to hold my head to the side. My right side had had excruciating pain for 3 years now. When I fell I hit my ribcage on the upper waist and my cheek and ear. Multiple xrays, mri's, ct scans, bloodwork, inflammation test,
kidney, liver, colonoscopies (two the last three years), endoscopies, exploratory surgery, adhesions removed, liver cysts removed. I have seen Thoracic Surgeon, Gastro's, Neurologists,
several ER visits ( which they see me coming and they think I am crazy and treat me as such)
none of the Doctors take me seriously except for one Thoracic Surgeon and he is afraid
to treat the herniated disc at T8 and T9. These discs can cause abdominal and bowels issues.
I have researched this until I can't take it anymore. Here is my story. It was one day before
my Birthday. I had walked that morning two miles and felt great. I saw some Ivy taking over
one of my shrubs and stopped to pull it. I was on an incline and when I pulled it nothing happened. I planted my feet to get a good stance, I pulled again and it let go with a vengeance. As I stepped back to keep from falling, my tennis shoe hung on a concrete planter
positioned on my walkway, I turned and flipped over the urn, striking my waist and head on
the opposite planter. Two days later felt weird. Long story short, went to my Doctor, who
sent me for an Mri on my upper torso, nothing but bruising. They did not bother to look
at my head until I had the detached Retina and that was a month later. Since that time I have lived in Hell. I awaken every night around 2 a.m., excruciating pain in my waist under my
right rib cage. I am so nauseated I have to get up, I walk the floor holding my side, I feel
like I have a huge ball in the bowel, when my bowels move, it starts to ease somewhat; however I have had chronic constipation since the fall and nausea. over a thousand days of no sleep, chronic constipation, chronic nausea. Doctors on want to give you pills, not actually try to find out what is wrong. No one will listen, I have been everywhere and Doctors just do not seem to want to find out why I hurt. I am not depressed
good Cognitive skills, balance, but the pain is exhausting me. I do not know what to do,
no problems sleeping if I were not in pain. I sleep about 3 hours a night. I am bloated, tired, frustrated, constipated and can't lie on that side. I sleep with icepaks, heating pads and am just plain sick of it. I told
a Doctor that told me" you are just afraid of dying." No I am not afraid of dying, I am afraid
of living like this several more years. This is constant. I have no life. Tens machine helps sometimes, but other than that, nothing seems to help. I would love to go to someone that would observe what i live through every single night. I eat exlax
like Hershey Candy Bars. My guts hurt to say the least. As of right now, I have chronic constipation, liver cysts, chronic nausea, pain on the right side and when I push in on my waist, I wish I could take a knife and cut it out. I would love to go to the Mayo Clinic, when
this happened in 2021 the height of the Covid Pandemic, I took the shots which made it
worse. Tried to get an appointment in Jacksonville, but could not get in. Don't know if that had anything to do with it, but shortly after the shots is when i fell.
Shots put me to bed for a week, but thought nothing of it. I have since had Covid, Shingles and the Flu. Will not take another vaccine, don't trust them. I have enough going on without
more symptoms. Oh well, just the hand I was dealt, but awful strange many of these texts
sound like mine. Right now my go to, is Advil, Tens machine, Zofran and Prayer. Prayers for all of you, just wish someone had an answer. I have had epidurals to boot, even hip replacement and struggled with the pain. I hate pain meds, because they constipate me. No easy answers. Hang in there, you are not alone!

Jump to this post

That MD's diagnosis of your mental state was totally unnecessary and guess the doc was covering for not knowing how to treat your condition. I have lost faith in so-called pain management specialist. No matter where I sought out treatment, the process was the same. A couple of spinal shots, a prescription of gabapentin and advice to call the doctor in 2 week. Well after several of these 2 week hiatus from the doctor, I still had pain and it appears to be worsening. Pretty much running out options.

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