belew i understand your frustrations. indeed i was similar to you for a while. what you need to do is continue to search for a good dermatologist. i went through plenty before i finally started finding good ones. its important to find a good one that will work with you. In fact i have just started on a new treatment which i believe has never been tried before and my dermatologist has been great and very helpful.
When looking for a dermatologist i always search for reviews of the clinic and dermatologist i am visiting. Read what previous patients have stated to gather information if there worth seeing. Try find a doctor who is advanced in the latest treatments and approaches. Theres alot of new treatments available and i guess most dermatologist would have to prescribe medications "off label" for our condition. Also when visiting clinics make sure you don't freshly peel your lips and walk in with out pictures or something to show them the severity of your condition because they most likely won't understand if you freshly peel your lips and walk in.
I know its frustrating but the dermatology industry is growing rapidily and is becoming more equiped with new treatments annually now is the time to seek help.
There most likely won't ever be a universal treatment for ec because its not common but its about finding a dermatologist that is willing to try treatments. There are smart dr's you just have to be patient till you find a good one. Best of luck