I've spent 17 yrs in horrendous pain due medical neglect. It took me many, many years to fully understand my condition which went from a small injury to a very serious , debilitating situation. I was terrible at advocating for myself, but im now so traumatized, I sometimes go the other way and am " snotty" with Drs if they dont listen, or tell me something i know is incorrect.
Yes, i've lied because like you in ER multiple times could see there was no help, so I said im fine, I wasnt, and went home devastated.
My best advice learn all you can about your condition and be very educated. Knowledge is power and it makes advocating easier. If you have Mals, have you nit been offered surgery. I have a similar pain which is due damage to Celiac Plexus nerve bundle. I suspected Mals, it was ruled out but yes this type of pain is unbearable to live with. I get the biggest relief from Xanex, fir me very effective for nerve pain but its not designed for that, increasingly hard to get and does carry physical dependency. Im not an addict, if my pain subsided, I could easily stop, but my damage is so long term its now in my spine so that's not happening. Has anyone ever mentioned Celiac Plexus pain, it carries similar symptoms to Mals as I said.