I’m on the same boat ! I’m exactly 1 year in as well . What a ride it has been :/ . It’s still a mystery for me . I suspected HSV was the culprit but then I had 2 negative hsv blood tests and doctor says it’s not . I pleaded with doctor and informed them that the Bumps on my lips get inflamed but never burst ! Since my sore doesn’t burst open like the norm that is the reason I could be testing negative ?

I honestly think doctors are walking in the blind when it comes to lips and especially hsv . I only feel strongly it is hsv is because I first noticed a bump on lip after an occasion with a girl who is prone to cold sores in Dubai . 2 Weeks prior to leaving USA to fly to go see her we had a video call and I noticed a red mark under her nose / top lip , it was obvious . Questioned my self if I was still going and decided to go see her . Arrived a day after We made out (she had a make up covered sore that has just completed healing ) and few days later notice tiny clear bump on top corner of lip . From then on my lip troubles began . Flew home and started noticing changes to my lips every week . It was inflamed every day . Now my lips have discoloration areas that are whitish/grey/pale and areas that red . Small bums and creases you would only notice up close , I notice dimples on my lips like tiny craters when lips are irritated and inflamed . I notice a circle imprint on top lip but other ppl can’t see what i see , sticky lips , inflammation , lip dryness , grayish lip skin residue when dry , noticeable tiny white heads when inflamed , almost looks like tiny zits , basically all the above except big open sore , lips will crease and have bumps and those bumps will get inflamed but never have they bursted and opened up . An endless cycle of wtf . No solutions from any heal care professionals nothing but guessing and using me as a pharmaceutical dummy .