Hi @erikas, I have had a constant gut ache 24 hours a day since spring of 2018. I had mild gut pain from navel up (2-7 level) for 20 years (up to spring 2018) and had it thoroughly looked at over the years and came up with nothing, Nortriptyline helped a lot of it and made it livable. An ache like you haven't eaten in a day type pain from above navel to under my xiphoid process. Now the gut pain that started in 2018 I thought was more of the same and that the nortriptyline stopped working. I had an upper endoscopy and CT scan which were negative, tried various meds and had labs. By end of 2018 the pain was a consistent 5-6. In the spring of 2019 the pain also added the area down to my lower pelvis with sharper pain when pushing in over my bladder. So now from pelvis/waistline area to xiphoid -always 24 hours a day, level 6-7 up to about end of 2019, its down the middle of stomach about 6 inches wide. More tests were done in summer of 2019 and no bladder issue, its sharper down low and more pressure under xiphoid to navel. Had an MRI of abdomen and bladder scope, all negative. The pain seems to be in the myofasical area, the thought at first has been an entrapped nerve but I dont have one small area that pinpoints the exact spot. I had injections in later 2019 and early 2020, first in my ilioinguinal and iliohypogastric nerves on each side far side of my stomach with steroids', after a day the lower pain was about gone and above navel improved-though only lasted two days. Tried also injections into genitofemoral nerve, erector spinae, and thoracic epidural (had an mri lumbar and thoracic) those didn't help. It was noticed then visually and it then dawned on me a long while ago that I noticed a bulge from a navel to my xiphoid, I just thought it was from being out of shape. I had a surgeon check and said I have a decent size diastasis though no hernia, i had never heard of a diastasis. Dr wasnt sure that it was causing my problem. Also had a hida scan, nerve and muscle conduct study and all good there. Oxycodone, Hydro, other pills and nothing to have pain let up. Since Jan 2020 pain is 7.5-8.5 every minute of the day. Its actually worse laying down, pain is so bad that I don't want any pressure or items laying on my stomach, I use to sleep on my stomach as it helped some with the mild pain I had from 2000-2018. If you lie on your side and then push into the side of your stomach the pain gets worse and shoots up and down the middle of ab wall, more so down to pelvis. My new GI doctor said she thinks its abdominal wall and muscle/nerve related and should go to Mayo as I have exhausted all in St Louis. I hadn't had a colonoscopy in 4 1/2 years so had one of those done recently with new GI doctor, all good there. I did talk to a hernia micro surgeon and colorectal surgeon and both no answers before new GI doctor. My bowel habits changed a year ago with softer and going a lot more often most days, I did start eating less out of depression and nothing seemed good back in June and July, in 4 weeks I lost 15 lbs. I started eating more normally since August (I have always liked to eat) and really haven't put the weight back on which is odd. I tried for years to lose 15 pounds as I was 6'0 and 225 lbs, most of my weight was held in the gut area.

I did call Mayo 3 weeks back and they created an ID # and told me to fax all records to GI dept. I first sent my full summary and test results that I had, then within a week had all doctors do the same. I got the Mayo form letter back saying at this time we can't assist you, that is depressing. I called and was told they are very busy now and that other depts didn't look at my case. I pleaded and they said to have my GI doctor send a referral to the Mayo Pain Clinic and they can review then as all of the records are in the Mayo system now. That turn down letter was dated a day after me just sending in my review of my situation and all I have tried.

From reading more and more it seems I have Myofascial Abdominal Pain Syndrome with many trigger points. I now for the last 4 months actually hold my stomach with my hand to hold it from moving around as it hurts more now when doing steps, twisting and to a degree now with just walking. I don't understand how a pain can't let up at all, I can't function well and barely keep up with work now-thankfully I work from home. Being in pain this long takes its toll on you mentally and beats you down. It affects your whole family, how can you be positive when your in pain all of the time. I am a tension headache suffer and always have some tension band going which can go up to an 8.5 at times, I learned to live with that as its not always that high but never a zero. This gut pain I cant live with. I wish someone had some advice or answers, seems most all doctors only work in a small box and immediately decide its not their field and say good luck.

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