Has anyone been diagnosed with Abdominal Wall Pain?

Hello,
I responded to a post somewhere here..don't see it... I have been suffering from suspected ACNES due laparoscopy in 2016. Clev Clinic Dr only person in South Florida who seems knowledgeable of it but can't help further.
I had a Spinal Cord Stimulator inplant 6 months ago after developing severe back pain , within 4 weeks my Nerve pain was excruciatingly to point I became bedridden mostly. I switched it off.
Drs still refuse to accept it exacerbated my pain but I'm just post a Nerve Conduction Study ( shot up with strong electrical current) most horrendous pain of my life. Took numerous days to recover. Preparing my records for Dr Gillespie. This condition is truly destroying my body. Am almost 6 months on a soft/ liquid diet/ can't tolerate normal diet due severity of digestive pain.
It would be nice if "posters " report back if they get help and what worked. I for one would be very interested to know if and how people get resolution.
This is a devastating condition.

Yes! My daughter was diagnosed about 6 years ago after testing for Crohn's and other digestive disorders. She is doing really well on the daily meds. I have mentioned mast cell activation several times on this thread but don't get much response. There simply are not enough doctors who know what it is. They diagnose Sibo and IBS (which I think is just a symptom of an underlying diagnosis). There is a good deal of info online with a google search. What was the specialty of the doctor who diagnosed your grandson?

Hi, @ggr - here are a couple of Mayo Clinic Connect discussions on mast cell activation:

- Mast Cell Activation https://connect.mayoclinic.org/discussion/mast-cell-activation/

- Mast Cell Activation Syndrome or Histamine Intolerance https://connect.mayoclinic.org/discussion/mast-cell-activation-syndrome-or-histamine-intolerance/

How dod they diagnose it? I have been dealing with abdominal pain for the last 10 months and all the tests other than a stool test that showed exocrine pancreatic insufficiency and have been taking enzymes but still having excruciating pain and nausea.

In my case it was diagnosed by Carnett's test and treated with trigger point injections. Works pretty well, but where my gall bladder was still just never seems to get completely better. It is usually from abdominal surgery. I had 2 c-sections, multiple endoscopes, EUS, and so many ERCP's, and then splanic nerve ablation, gallbladder removed, and cervical branch ablations.

I honestly don't know. There is not a blood test. She was diagnosed at Mayo Scottsdale, and there were lots of tests. She was also diagnosed with POTS and Ehlers Danlos. Those three disorders tend to go together. I think it is ruling out other things, looking at history, and making the connections to the other disorders.

Hi Jeff. I am diagnosed with CAWP - Chronic Abdominal Wall Pain, however, my GI who did the Carnets Test says he does not handle that. I do TPI but they don't work. I have had several abdominal surgeries and have 3 "hot spot" trigger points in abdomen and 1 in my upper flank back. Is a general surgeon my best option to get help and more testing to nail down the correct issue and maybe better pain treatment?

@anniesezu812
I've been reading through posts on ACNE's and Adhesions, and noticed your post. I think I have Adhesions and maybe ACNE's from a gall bladder laparoscopic surgery in June of 2023. The possibility of adhesions post surgery wasn't discussed at all. I started having pain about four or five months post surgery. I've had imaging done: endoscopy, colonoscopy, CT and ultrasound; all of them don't show anything internal in the GI tract that would be causing the pain/discomfort. I've seen two gastroenterologists and neither can explain what is going on, other than if I have adhesions they won't show on imaging and only found with exploratory surgery. They wouldn't do that unless there is an obstruction happening, and right now there isn't. they both suggested either amythryptaline or northriptaline (not sure if I spelled them correctly), but the possible side effects don't sound good. Are you taking anything for pain? If anyone else that reads this has any experience with dealing with the abdominal wall pain, please respond.

Yes, I have had bad ilioinguinal nerve pain and anterior cutaneous nerve pain. It took forever to diagnose. The anterior cutaneous I had cut. The ilioinguinal I have no choice but to try spinal cord stimator.
My nerves are covered in scar tissue. Either from my hysterectomy and or severe endometriosis. Even though it was 30 yrs ago.
I would suggest you go to a pain specialist they can inject the nerves with the steroid and a numbing agent and that's how you diagnose that that's the problem.

Good luck

@aesmayo01 I've been fighting with it for 4 years it's taken forever to get it diagnosed unfortunately it's not the first thing doctors think of but it's far more common than we realize that these nerves for some reason either get in trapped or full of scar tissue and unfortunately pain medication does not work great on nerve pain. It can become so debilitating it's difficult to get anything done sleep or eat I'm scheduled for a spinal cord stimulator as my last hope for some relief.