I have seen a specialist today. I traveled all the way to Haverhill, and it cost me a fortune, but hopefully it will lead somewhere.
My specific case is likely to be genetic. I am probably going to be giving blood for genetic tests in the near future, and my mother may do so as well if the doctors find some interesting gene.
I was also told I do not have "typical EM", but rather a vascular malfunction, that is likely to be genetic, and that is likely to go away in the future, as it did with my mother. (She never knew she had EM, but as a child she had horrible experiences similar to mine.)
Upon seeing pictures, he said it would help my SPECIFIC condition to take anti inflammatory pills and topical treatments as soon as a flare up shows up. But again, this is a specific case, and everyone should see a specialist before self medicating. It does feel like an inflammation when I get that particular type of flare up so it made sense that he recommended that.
For now, I can only manage it as best I can, which is difficult because I am an actor and performer. But my case of EM is not as bad as some cases I've seen. My process with this doctor will be long term, and we will have a long medical relationship to try and reach a solution.
I wish everyone the very best, and I hope this helps. My main advice is: do as much research as you can online, dig deep, and MAKE SURE YOU FIND A SPECIALIST, because there will be someone who knows about EM, you just have to find them.
Happy holidays all x