Trying to connect with Lichen sclerous and vulvar cancer women.

@andwho yes. Squamous cell carcinoma.

My vulvar cancer started with LS. Took many years before being diagnosed. Too late at that point! Drs need to be more educated & aware of LS. Ended up getting a vulvectomy with reconstructive surgery! Can you relate?

I was diagnosed with LS a few years ago. Recently after one spot of blood in April, I received my endometrial biopsy results on my UPMC app and I see I most likely have serous cancer. I am waiting for my doctor to call for next steps. I am glad to have support. My family is upset and I am trying to be strong.

@dobraka @kellytzoumis @iama1survivor @andwho I have lichen sclerosis. Gyno put me on Estrace (estrogen) and Clobetasol and told me it’s a low dose of estrace so it won’t cause cancer. Well 9-10 months later I got cancer but it is not vulvar it’s Endometrial adenocarcinoma FIGO grade II. Endometriosis type. I went to a gyno oncologist (was gonna go to Mayo but found this guy who had a heck of a background) and he told me full hysterectomy and salpingo oophorectomy is the normal procedure BUT said there is an IUD procedure that has great success so my choice, and I chose the IUD. In and out procedure, had no pain just some recovery and spotting (very recently done). Anyway I didn’t know about vulvar cancer from lichen sclerosis and saw my dr. today and he’s aware and I’m on watch for that now. All thanks to all your posts. My review today from the surgery and biopsy and scrapping he did is a very good review. Best to everyone dealing with lichen sclerosis and any type of cancer and to Mayo posts which helps keep us informed!!!

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.

Yes, I can. Luckily my Primary Care doctor diagnosed me right away, and I had a vulvectomy and just had reconstructive surgery. The past 2 years have been a long hard road.

@vickiehane
I was diagnosed 3 years ago either vulvar cancer. Was a result of undiagnosed LS. Received radiation & chemo. Vulvar came back 3 years later. Needed a vulvectomy & reconstructive surgery, it’s been 2 months & still in a lot of pain& cannot sit. Are you experiencing the same?

When I had my vulvectomy it took about 4 months before I could sit. It was very painful, and caused a lot of isolation for me. I did discover that using a donut to sit on wasn't the answer. A friend told me she used a mattress from a cradle to sit on. I borrowed it, put a pillow case on it and it made a world of difference! Try it!

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

@dougajoi I have an elderly relative suffering from Paget's Disease of the Vulva, not LS, but I am looking for a specialist and some ideas about comfort measures. She used some kind of lotion (not estrace/estradiol) that was supposed to eliminate the lesions, but finally had a radical vulvectomy and the lesions have returned. I would love to get the name of your specialist because her gynecologist/oncologist seems to have no ideas about comfort, let alone how to treat her current status. Her choice is suffering with the lotion, which she describes as "cauterizing," and suffering with the lesions. I can't believe she is expected to endure this. Another surgery is not an option, especially because it didn't help. She was told not to use estradiol, but your post makes me wonder if she needs a second opinion.