Hello,

I have been diagnosed by PVL as well. Im female 37 and it started 3 years ago during pregnancy. I also have oral lichen planus and a dry mouth.
So far 2 biopsies have been performed and came back as mild to moderate dysplasia. My lesion is on the lateral tongue
Management protocol recommended was observation every 3 months. I am being seen by an Head and Neck surgeon at a cancer center.

Im very thankful to this forum that i have been able to connect with a few other PVL patients. considering its so rare, not much info available.
My observation, with pain is the pain is not from the lesion as such but I get canker sores around that area. So trying to avoid any irritants has helped.

Thank you,
Vamsee