Erosive Lichen Planus/ Sclerosus?

I have been suffering for a while now with burning and a raw vulva and it looks like I am finally on my way to a diagnosis. I have had this disorder in my mouth for years but never knew what it was. I just thought when it flared up that I had eaten something that I was allergic to. Now I have it on my vulva and in my vagina. The cells of the tissue come off and leave raw skin. When the skin heals the tissue has changed to different texture. As happy as I am to of found out what it is, I am very scared because my doctor actually left the room to look it up. I was hoping there might be others who have dealt with this and could give me some advice. I have been given a ointment to apply and I am so scared its going to burn like everything else I have tried. Also, if anyone does have this who do they see for treatment? A gyno or a derm?

homeselling

There are several of us here with Lichens Sclerosus, not sure if anyone has Lichens Planus.

I know for my Lichens Sclerosus I use clobetasol 2x a week, originally I had to use it daily until things were under control. I try to wear cotton undies and use fragrance free laundry detergent and softener. I had a uro-gyn diagnose it but my gyn is familiar with it and watches me. I've asked my dermatologist about it but she never really checks on it. Many women go to dermatologists. You want to find the Dr that knows and understands it.

You can search for lichens to see old threads.

I have just started the clobetasol as well. It kinda burns but I guess that is to be expected. Did you have any vaginal shedding or discharge?

I did not because mine is only external. Did the Dr do a punch biopsy of any of the areas to confirm the diagnosis? I know for LS that is the way the confirm it. Since my LS is not erosive, which makes me think that you probably have LP, the clobetasol doesn't burn.

This is an older thread, are you still here OP? I have LP and have been through a lot over 6-7 years with it. I'm in a good place now and would be glad to share with you if you are still struggling for information..

I also have Lichen Sclerosis I use clobetasol Now only for maintenance ,I have been wondering if t would flair up during recovery Luckily it has not Wow we do share a lot of the same stuff Well its nice to know you are not alone

I have been suffering from Lichen Sclerosus for many years. My gyn diagnosed me and and I was so glad when I finally got the dx. Clobetasol is what I was treated with and I had to apply it daily for a few months and then a few times a week and I am not down to just when I know I will have a flare up. It is usually when I am about mid-cycle (still have my ovaries so I am now just having my first flare-up since my TAH in October). I have found that vagisil works great to numb the area when it is bad. I have had my entire vulva shed and even part of my perineum. When this happens, peeing is awfully painful. Heck, even sitting or sleeping was bad. I learned to numb it when it is bad or before I have to apply the medication to avoid that unpleasant feeling. Mine has gotten better over the past year. I do know that stress causes mine to flare up. I hope you find relief soon.

Hello there!
This is my first post! Is anybody still dealing with Lichen Planus? I was diagnosed last year, orally. In December, I had a D&C, scope, ablation, and tubal ligation. Had LOTS of draining after, a raw vagina because of this, the tissue was closing in, and painful sex. I was told the ablation didn't work for me. I just had my hysterectomy on 7/14/16 (with a new doctor that takes me seriously, and listens). However, for some reason, my notes were never finished by staff, and she didn't realize I had Lichen Planus. When I brought it up, she said looking back that I probably did have a flare up ON TOP of everything else. One week post op, she had to do a light internal, and said the tissue was MUCH softer since the surgery, which is good news. I am nervous now, of course, but have decided that there is nothing I can do about it. Especially right now, post surgery. I am going to try to buy my time until 6 weeks. And take it from there. She DID tell me, that I will most likely have flare ups as I get older, and that it's treated with steroid cream. (Just like the periodontist said about my gums...) Here's hoping for good tissue!