I have had chronic abdominal wall pain since 2018. It came on after a period of using a waist trainer, but I think it was really triggered by taking a big dose of ibuprofen on an empty stomach (god knows why, I read somewhere nerve damage is a rare side effect of ibuprofen.) For me it is accompanied by a strangling globus sensation in my throat and complete loss of appetite. Pain does not change in relation to meals and none of my symptoms match MALS.

After complete work up I self diagnosed with Carnett’s sign, went to a pain management doctor, had a set of nerve block injections. Pain went away for one afternoon so I knew it was that. I found the one surgeon in the UK who does the neurectomy surgery for ACNES cases and had the operation on the 18th of December 2019. It has made the pain much worse.

Nobody could understand the link between the ACNES pain and the throat/appetite symptoms so I went down the road of thinking that part of it was acid reflux. I ended up having anti reflux surgery, which has made no difference whatsoever (now I have side effects of that surgery to contend with too.)

I don’t know what else to do. I’ve tried a myriad of alternative therapies. I feel like after the neurectomy there’s nowhere else to go. I wish I’d never had the surgery, all the studies I read indicated that it helps in most cases. I’m so tired of being in pain, having no appetite and feeling like I’m being constantly strangled. This started when I was 26. I’m now 28 and I feel like my life is over. I don’t want to spend the rest of my life with this pain. It really, really sucks.