Trying to connect with Lichen sclerous and vulvar cancer women.

Hi, I was diagnoised with LS Spring of 2024 and had surgery June 2024. My doctor was confident that it wasn't cancer and just precancerous so he didn't mark where the tissue was removed from and sent 8 samples to pathology in one container. Turns out one of the samples was cancerous! My area was from my vagina to my rectum. He couldn't get a clear margine without going into the spinter. Turns out he did actually remove part of the spincter muscle causing fecal incontinence. Doctor decided it was best to remove all of my groin lympnodes because no scentonial lympnodes were checked. This created a huge family conflict and my oldest daughter has cut off all contact (and I've never seen my grandsons again.) She felt I should just have them all removed and attended the doctor's appointment with me. Lymphedema, cellulitis and other risk were not discussed. Having a good friend with Lymphedema I knew how it affects your quality of life. I ended up going to Mayo clinic and Dr. Cliby was amazing! He was aware of the latest technology and was able to remove 2 lympnodes on the left and 3 on the right, and no cancer was found. The follow up care from the surgeon was horrible with him never seeing me again after July 3rd appointment. I switched to a different Oncologist and saw her in December, 6 months after my surgery. The surgeons records showed that I had a HPV. I never had a HPV, I had LS. Resulting in me hand delivering proof that I did indeed have LS at my March appointment. My primary care (original diagnoises and my Gynecologist both faxed the information to her office and she told me the information was never received. It was a horrible experience having to advocate so hard for myself and prove every detail!! Received an appology from my new Oncologist and she started treating me for LS with estrogen and Clobetasol 9 months after my surgery. Had Pelvic floor surgery June 2026 and correction to my spincter. It has been a long process.

@vickiehane I am sorry for all your trouble. If Dr Cliby did a good job, why did he not continue to manage your care? I am trying to find someone to help an elderly relative suffering with Paget's Disease of the Vulva. Both the lotion treatment and the surgery did not resolve the lesions and she is suffering so much. I can't believe she is expected to endure this pain. I hope your recovery has helped you.

@vickiehane
A donut doesn’t help me either! Can never get comfortable! Do you use anything for the discomfort?

@andwho yes I did, postpartum spray and postpartum ice packs. I got the new Mom entire kit at Target. The spray really helps along! I also used a sitsbath that had an adjustable fountain. It was great, but I could only be on the toilet so long. I also used vaseline. Let me know of you have any questions. Good Luck!