Newly diagnosed and confused over treatment for lichen sclerosus

@eileenb1022
Thank you for your response. Just curious what did they treat you with for the eczema?

@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.

@andwho - Just looking here at your most recent post, PLEASE seek out a gynecologist.

I do see a dermatologist for other skin issues, but in my 40+ years of staying on top of Lichen Sclerosus (LS) I have only found that my gynecologists were the medical professionals versed in the latest developments on LS. And, just for perspective, I have lived in at least 5 different states throughout my careers; what that means is, I could have run into quite a variety of gynecologists and expertise, but fortunately I always had consistent guidance that (as far as I could determine) was up to date on LS, and could recognize abnormalities and do a biopsy when there was any Q of concern.

I hope seeing a gynecologist is possible for you, and that you find one that you respect and are comfortable with.

@brandysparks
Thank you for all your advice, I am seeing a dermatologist & have been to gynecologist. My dermatologist is the one that diagnosed my LS. Am seeing her next month for follow up. Will keep you posted.

@andwho Wonderful. 🙂

Yes, do let us know how it goes!

@andwho
I don't remember. I did use coconut oil but now I use a vulva balm I get on Amazon cause I have sjorgens and I get dry and it helps a lot.

@andwho, I wish I could help you. I use Clobetasol twice weekly. I have red spots and my gyn told me they were broken blood vessels. I did have surgery a few yers ago to remove pre-cancerous lesions. I am not saying this is what is wrong with you, but I think you should ask your doctor for an appointment sooner than later. LS is miserable and you have a rash/sore that is a worry. Please let us know what your doctor says. This might help someone else who has a similar problem. I use a compounding numbing cream because I burn constantly. My gyn thinks I have nerve pain and I think that is correct. I take 50 mg of Amitriptyline at night. With all good wishes, @joybringer1.

@joybringer1
What numbing cream do you use? I have a follow up with my dermatologist in February & gynecologist also in February. Will keep you posted! Thanks!

@eileenb1022 I was diagnosed back in May 2019 by biopsy. Started with Clobetasol but that made itching worse. Finally found out that I'm allergic to methylprednisoline which is a steroid as I've had reactions to that in other preparations. I have done some investigation and saw that someone used evening Primrose oil, and Emuaid max. The oil i take is a capsule which i take once a day(otc) and the other is an ointment that I use for flares. I have been without a flare up in over a year now. Good luck in finding something that works for you as people are all different.

@brandysparks - Hi. I've tried so many things over the years for lichen planus in the vaginal area. I had seen various dermatologist and primarily was using clobetasol every other day and estradiol in between. Only mild improvement was noted. In the fall of 2025 I began seeing a uro/gyno . At that time I could barely urinate. The first time I saw this doctor he immediately said I needed to have surgery for labial adhesions. In January last year I had the surgery. Recovery was awful and did not accomplish what was anticipated. He said I had an uretheral obstruction that does not let the urine pass easily. Even now, when I pee and the urine hits the outside tissue it burns so bad it is hard to tolerate.
After reading your post I'm going to try spraying the area with water before peeing and then again afterwards. Then I'm going to use vasoline rather than clobetasol--to test and see if I might be sensitive to it. I'll continue to use my estrogen cream every other night. I keep hoping I'll find something that will work in my case. Thanks so much for sharing your story. Faye