Hi! I can absolutely commiserate. I have leukoplakia lesions on the roof of my mouth, and on my upper and lower gingiva. I have been watching it progressively spread for the last two-three years, but so far since my biopsies have been negative for squamous cell carcinoma or dysplasia, my doctor just wants to stay in "wait and see" mode. Based on my research, my lesions are definitely PVL and I would prefer to take a more aggressive route, but have yet to find a doctor who agrees. I think doctors see PVL so rarely that they aren't as familiar with it as they are with lichen planus, lichenoid reactions, etc. Good luck and continue to advocate for yourself!