Lichen Sclerosus: Any other women dealing with this disease?

I use the regular, green label, and the cream when things are sore.

This is an old thread, but I’d like to share something that I believe has cleared up my symptoms. I’d like to start by saying I was diagnosed about 3 years ago and started on an ointment (can’t remember the name of the first one). Then, about a year ago I saw a new OBGYN to check in on my condition and she suggested I should be using the gold standard “clobetasol”. Up until a few months ago, that’s what I had been using to manage my symptoms which would creep up every week or two.

A few months ago I got what I suspected to be a yeast infection. I treated it and purchased a boric acid foam wash by pH-D to add into my shower routine. After a month or two of regular use (the first few weeks was daily and then I went to 1-2 times a week) I began to notice that my lichen symptoms were gone and I hadn’t had to use my Clobetasol in quite some time.

I know this is very anecdotal, but I wanted to share as it could work for someone else. Is it the boric acid foam wash? I don’t know for sure, but it’s the only meaningful change in my routine that had occurred in conjunction with my flares stopping. Hope this can help! I purchased the wash on Amazon for less than $10.

@sbosak1967 just added a comment to this thread about my success with pH-D Boric Acid Foam Wash. My symptoms have all but disappeared! I use the wash a few times a week. You can find it on Amazon for less than $10

@habs
I have read that it's a possible treatment. The caveat is it has not been studied. I'm really glad you found something that helps you feel better. I hope you are free from flares.

@kristine31 Hi what is the mighty? Can you link the support group? Thank you.

@danybegood1
I think you’re very brave hun x

@suzyq04 Yes, it is a horrible disease/condition. I have Sjogrens as well and I am sure that contributed to it. Clobetsol does stink so bad. I only use it when I have a reallly bad flare. There are times the itching and burning are so bad, I think I might go insane. Anyone have any other methods of coping with this horrible monster?

@prudence21 I also have lichen sclerosis and have been under the doctors care now for almost 2 years. I use clobetasol twice a week and also use Vaseline to keep that area protected. I found that it helped me to use soap that has no fragrances since that could irritate the skin. I now have no itching or soreness in my vagina. I hope this helps. Any harsh soap will only do more damage since lichen sclerosis causes the skin to be very thin. As we age we as women deal with more and more issues so I do follow the advice of my Gyn. She is amazing. Good luck and stay strong !

Hello,

I am 60 and was recently diagnosed with Lichen Sclerosus. This was very unexpected. The only changes I have noticed I attributed to menopause.

My diagnosis experience was horrible and am hoping to know if this is normal?

Had a pap done and that was when doctor indicated I had LS. The pap was painful and I went home torn and bleeding. This has never happened in the past. During exam, doctor asked if I wanted a prescription for LS. Since I was not having any unusual symptoms I indicated I wanted to think about it. So went home did some research and used a mirror to check the area. I had not looked down there in years. LOL I did see changes such as thickening, fusing and a little bit of white patches.

I followed up with message to doctor that I wanted to go ahead and get prescription.

Then doctor stated I needed to come back in for biopsy. This was not indicated previously and doctor had made it seem like she knew what I had and was ready to prescribe something.

So I go back in for biopsy. Is it normal for that to be very painful? I felt everything. Two punch biopsy and subsequent stitches. It was horrible and I hope to never have to go thru that again.

Three weeks later I follow up on biopsy result and doctor proceeds to tell me they never sent to lab because it was too expensive and she already knew I had LS. What???! It cost me $200 out of pocket for that biopsy. Not to mention the pain involved.

I need to find another doctor as I feel this whole experience was unprofessional. I am in Southern California so would expect there to be someone specializing in LS. I am willing to drive a couple hours for a good doctor. Even thinking about flying to Florida to see Dr. Jill Krapf.

Can anyone recommend a doctor on the West coast? Or how you found one.

Has anyone had similar experience with diagnosis?

Thank you!

I was diagnosed with Lichen Sclerosis several years ago. I use Clobetasol Propionate Ointment USP 0.05% as needed. It works. Hope this helps. I live in FL, so I cannot help you with a doctor. However, this is what my gynecologist prescribed and it relieves the symptoms on contact.