I am so sorry you have gone through so much. I have had Lichen Sclerosis for years and recently had a biopsy and was diagnosed with non-mammary paget disease of the vulva. Seeing a gynocological oncologist. He said he does not want to remove as it just comes back. I get that but frustrated with credible information on best treatment options such as the Immiquimod cream. After performing an assessment the dr. found another area that he "didn't like at all ". So now I have surgery scheduled to remove that area that was not biopsied. Very frustrated 🙁
Did you have any testing for underlying cancer?