← Return to Lichen Sclerosus: Any other women dealing with this disease?

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@brandysparks

@kewp - I have had a recent "trip" through procedures that were necessary after having tracked m LS since it was diagnosed about 40 years ago.

PLEASE see a gynecologic oncologist for important oversight and care of this lifelong condition. My recent biopsy, at the end of 2023 raised concern, and identified I had developed precancerous VIN II/III (Vulvar Intraepithelial Neoplasia at the highest end of the I - III range). That necessitated a procedure called Laser ablation, done with a plasma jet approach. That took 7 weeks - for me - to heal from, and the biopsies taken just before that procedure on the day of the laser ablation raised another possible site of concern.

So after healing from the laser ablation (very important procedure for my case), a further biopsy was taken (POST procedure, 7 + weeks later), and fortunately, it was NOT precancerous.

I have used Clobetasol propionate 0.05% for years, to varying degrees, as directed by my gynecologist, and gynecologic oncologist recently. I am by far more concerned with finding myself diagnosed with a precancerous (VIN) condition again that can lead to cancer, than I am with thinning skin.

Given, in my case, how long I have had this condition, I have not had an issue with thinning skin.

Please consider reading more about this on academic/research sites like http://www.nih.gov (National Institutes of Health), for accurate information on this condition which still is not understood for its actual cause, and has no cure. BUT, it can be managed, thank goodness, with the Clobetasol. As these sites, and previous helpful posts have indicated, what is known is that it has possible genetic components/origins and is likely an autoimmune condition.

If you'd like links to more academic/research resources, just let me know.

DO stay on top of it with a reputable doctor or doctors.

Best wishes. You CAN manage it.

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Replies to "@kewp - I have had a recent "trip" through procedures that were necessary after having tracked..."

@brandysparks - Oh, 40 years of LS & now VIN II/III. What a nightmare but thankfully the laser plasma jet helped! Hopefully no more VIN. This condition can get frightening.
Thank you for your input on Clobetasol & seeing gyne oncologist. I was surprised to find a few in my city & will call to see who takes LS & do biopsy if needed. I do have autoimmune Hashimoto thyroiditis & another rare autoimmune condition in remission (🙏). Plus in 2017, the rare Trichoadenoma (not STD) which might be genetic, and I used Clobetasol then. I’m glad to hear it didn’t cause thinning in your case.
I’m thankful to see all the information on this site & I’m still trying to absorb it all! Thanks again for your valuable info from your actual experience. Much appreciated & good luck to you! 🍀

@brandysparks

Quoting: "If you'd like links to more academic/research resources, just let me know."

As a retired medical provider, I already have access to NIH, MedLine, PubMed & others. If you could be so kind as to send share your compilation of resources, that would be great.