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DiscussionNewly diagnosed and confused over treatment for lichen sclerosus
Autoimmune Diseases | Last Active: Feb 11 3:07pm | Replies (141)Comment receiving replies
Replies to "@joybringer1 I am using clobetesol 2x daily. I just started. I originally told my dermatologist the..."
@andwho - Hi I couldn't use Lidocaine after my laser surgery to remove what biopsies had shown & were diagnosed as "VIN II/III" - Vulvar Intraepithelial Neoplasia, a precancerous condition. Very frightening diagnosis, but I had been diagnosed, and had been following for about 40 years, the condition of Lichen Sclerosus.
December of 2024 my gynecologist did do a biopsy of 2 spots/areas, and that is when it was identified as VIN II/III, and that removal of the areas was necessary. That was diagnosed and recommended by my then new gynecologic oncologist, who I continue to see.
Laser ablation was done in February of 2025, and recovery, I must say and share, was painful for me. The only relief I could get was from Vaseline. No other creams, ointments worked for me.
For many many years I have been using Clorobetasol propionate 0.05%. Imiquimod is what I use as directed as well since my surgeries (since mid-2025); 3x/week at times as directed by my Gyn Oncologist MD, along with the ongoing use of Clobetasol.
As I understand it, for some folks constant use of the Imiquimod can do the job, rather than doing the laser ablation, but I am told it takes up to 6 months of using the ointment, and for some it is very painful. As I have been directed to use it since mid-2025 it has not been uncomfortable at all for me. Amazing how differently these treatments affect each person.
So I strongly recommend finding a Gynecologic Oncologist that you are most comfortable with and respect, and staying on top of it with her/him. I go in for an exam every 3 - 4 months to keep up with it. I hope no further laser ablation or removal of spots is necessary, and there it is.
Feel free to ask further Qs, and I can share more about my own experience. My understanding is that there is no cure, and the cause of it remains a mystery. There are some online groups that can share others' experiences, but I have not participated in any so far.
Best wishes.
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@andwho, You must be having a flare. I use Clobetasol twice weekly when I am not in flare mode. Lately, I am using compounded Lidocaine 10% with Vaseline to numb the vulva area. I use this about every three hours. I burn if I do not numb. It is always a miserable situation. I see a gyn. I am not saying what works for me works for everyone. I did not have luck with what my dermatologist prescribed. I was there for my yearly check-up of moles and mentioned my LS problems. I gave it a try with her, but it was not for me. I am back to my gyn. Best wishes as you seek answers to your situation. @joybringer1