Newly diagnosed and confused over treatment for lichen sclerosus

@joybringer1
What numbing cream do you used? Thanks for any help & advise!

@fdixon63 - Yes, I hesitated to mention it specifically, but my 7-week recovery from the laser ablation surgery was excruciating...urinating was like pouring acid on myself...AND YET, the squeeze bottle I was given before leaving the hospital the day of the surgery was something that helped.

I filled it with water and carried it with me in a bag when we finally started to go out - like to eat at a diner. I'd spray it before urinating & during if I could manage it to lessen the pain. It was so painful for most of those 7 weeks that I couldn't help but cry out in pain each time I urinated.

But, for everyone, do use the water bottle for some relief after any biopsy or lesion or laser removal. There were some other creams that were suggested by others in this forum in the past few years (a silver nitrate-based cream that worked for some?; also the product Aquaphor in its various forms, though this did not ease the pain in recovery from the surgery for me).

Also, often I have found that British professional or academic medical sites have some more useful and/or up-to-date information on Lichen sclerosus.

Let me/us know if you need any further info, from my or others' experience/s. Best wishes.

@andwho, I use a compounded RX of Lidocaine 10% in Petrolatum. The numbing is supposed to last for 3 hours and then repeat every 3 hours. Sometimes it does not last that long and if I am still burning, I just go ahead and use it again. My medical insurance does not cover compounded meds. It is interesting that you see a dermatologist and a gyn. I was desperate one time and I had a regular dermatologist appointment so I asked her about LS. She said she treats that so I took her advice of washing my vaginal area with Vanicream cleansing bar and using Triamcinolone on the area. I did not improve and in fact, these two things made me worse. My gyn had an opening so I saw her and she immediately told me these two "treatments" were not good for me. I use the Triamcinolone on my itchy legs and did wonder if that was appropriate for my vulva. The Vanicream dried my skin. I have been with my gyn for around 15 years and will never ask my dermatologist for that sort of help again. I am not criticizing all dermatologists because I am sure that many do know how to treat LS, but I will stick with my gyn and see my dermatologist every year for checking my moles and such. With all good wishes, @joybringer1

I use Lisepten and nothing else. I have for many years and am very pleased with the results. My symptoms are so reduced, there's little visual sign that I have LS.

@hopefulme3
I have received laser treatment from urogynocologist Dr Coyle at Coyle Institute three times. The last one was Feb 2025. It was very helpful, opening areas of my vulva that had scarred together, and uncovering scar tissue on the clitoris. Tulip Procedure is what he calls it. He no longer recommends Clobetasol for LS. He has his LS patients using OZONATED COCONUT OIL. That has been extremely helpful this year. I use it a couple times a day. I’ve had no serious outbreaks since using it. I highly recommend Coyle Institute in Pensacola, Florida for LS treatment. The treatment isn’t overpriced and gives great relief. (I live in Arizona.)

@andwho
You are not alone in your LS diagnosis. I was diagnosed at age 48 (now I’m 65) and used Clobetasol until I was 64, with very little relief. I had an LS laser treatment in Phoenix that didn’t help AT ALL. I had three laser treatments in Pensacola, FL at Coyle Institute that were very helpful, a couple years apart. But the LS always comes back eventually, and is thought to be an autoimmune disorder. Dr Michael Coyle had me completely quit using steroid ointment last February, instead using OZONATED COCONUT OIL a couple times each day (I buy from Pur online) and for the first time in years, I’ve had no further lesions. I do have itching off and on, but it’s tolerable.

For the lesion that absolutely won’t go away, SSD cream helps me. A lesion usually heals after one or two applications. (Silver SulfaDiazine.) This isn’t something normally prescribed for LS, but is for burns, that quickly helps with healing the skin.

I hope you find relief. This is a great forum to belong to for LS sufferers.

@2thfairy
Thank you so much for sharing your story! I will definitely try the coconut oil. I’ve heard a lot of good things about it. Did you suffer with lesions? Clobetasol doesn’t seem to really help mine. Some days I think so & some days no. I do have SSD but didn’t think it would help, I’ll try that also, how long did it take for your lesions to go away & did it burn when urinating? Any advise is greatly appreciated!

@andwho
Yes, I have had many lesions that left scarring that actually closed my vulva to my urethra, thus the need for laser surgery to evaporate the scars so urination was free. The burning when urine hits those lesions can be excruciating, and we’ve all experienced it. I recommend placing ozonated coconut oil, emu oil, or even Aquaphor over the lesions before you urinate to keep burning away.
Also a frozen bottle of water against your vulva for several minutes provides great temporary relief from lesions. I usually do that lying in bed.
Hugs to you.

His long do the lesions last?
Is the clobetasol supposed to help lesions? Not helping mine!

Can you relate to this?
Any advise on what to use?