Anyone have success with treatment for vaginal Lichen Sclerosus?

@andwho
I learned on the podcast I mentioned, Lichen Sclerosis Support Network (youtube), how to best apply the clobetasol. There are videos about anatomy and why we need to get the best absorption. And from what I've heard it might take months to clear up sores. I hope you look at these for some support because this is chronic and difficult to live with day to day. I feel much better, as I said. It really felt like a blow though, to hear that I would have it for life. Then I thought of all the other autoimmune illness I live with, realizing that it was also going to be lasting for life!

@jw9
I’ve been using clobetesol since the end of November prescribed by my dermatologist for lichen sclerosis. It has helped with itching & inflammation. I do have a sore/ulcer on my labia which burns during urinating, she now gave me Silvadene for the ulcer but that burns. Is this a result of the LS? How long do sores/ulcers last for & any suggestions on what might help? Thanks for any advice.

@andwho
(love your user name btw!)
There's really no way I can give some kind of definitive answer because we are all so individualized with LS. I read a lot of posts about burning with urination and women are even using spray bottles to remove urine. If it was me I'd let my doctor know the Silvadene burns. Also ask if it is the result of LS.
I would never ignore any open wound/sore and work with my doctor to help heal it. It's the nature of these support groups to refrain from giving out medical advice. I actually appreciate that. Instead of medical advice we can help by sharing our experience. I have been back and forth to my gynecologist since this diagnosis. We deserve to learn what we can to live with a chronic condition like LS.

@jw9
Thank you for responding. I’ve read a lot about LS & sometimes think I am more informed than my dermatologist! She does say that the ulcer is a result of my LS. I hope so. I am not sure. Clobetasol does not help the ulcer. Can LS cause an ulcer? Have you heard that?

@andwho
I think you can trust your doctor. I see that you have asked and gotten replies from many others about LS. Of course it can cause ulcers. I wrote that I had fissures, which were ulcers that are long. So I hope you can move forward in most of all, trusting yourself. This is all quite unbelievable but it is chronic, for life.

You'll heal in other ways than an ulcer, once you look within and trust your experience. I wish you the healing that's needed to cope with a chronic illness. That's what I can offer from my own experience; since I was 30 I've lived with hypermobile Ehlers Danlos, 6 autoimmune illnesses. Chronic illnesses inform my life but do not define it. I lost my career as an RN in Oncology and became a poet and jewelry designer.

You can always look within and find a way through. I mean this all sincerely and with kindness.

@jw9
Thank you for your kind words! You are why we post. Support, encouragement & strength❤️ I would like to be able to find an LS warrior local to me. Even just to share our journey over a cup of tea!!’

@andwho
I have been thinking about how LS is something I'm living with, it's one autoimmune illness that I can't really talk about with a close friend. Unless there was an LS warrior, right?!
One other thing I'm thinking to share: It's Vulvar, not vaginal, LS. Everything I've learned is that it doesn't involve the vagina. It's actually an eczema involving the Vulva. Thankful for small favors! External, not internal.
If anyone has info that is different , please share!

@andwho
I have been thinking about how LS is something I'm living with, it's one autoimmune illness that I can't really talk about with a close friend. Unless there was an LS warrior, right?!
One other thing I'm thinking to share: It's Vulvar, not vaginal, LS. Everything I've learned is that it doesn't involve the vagina. It's actually an eczema involving the Vulva. Thankful for small favors! External, not internal.
If anyone has info that is different , please share!

@jw9 - It was good to see your clarification on the "body parts" we're talking about. It's quite the learning experience. This past year I was showing my vulva dermatologist a place on my arm that (I felt like) was a reaction to a new body wash. It was a rash type reaction and was actually clearing up as I had stopped using the body wash and was using a anti-itch cream. She immediately said it was classic psoriasis and prescribed Triamcinolone Acetonide Cream 0.025%.
I searched just now and this is what the internet says about this cream. "Triamcinolone acetonide is a potent synthetic corticosteroid used to reduce inflammation, redness, itching, and swelling from skin conditions like eczema and psoriasis, also used in injections for joints or lesions, and nasal sprays for allergies."
So, I'm wondering if anyone has had this prescribed for their LS.
Thanks.

@fdixon63
I guess women with LS are just privileged(!) to finally learn about their own anatomy!

About the time that I started having problems with LS, I also was diagnosed with both scalp psoriasis and other places on my hands and arms. I use liquid clobetasol for my scalp when it flares (itchy) and also have the Triamcinolone cream for my other psoriasis.

As far as I know, Clobetasol OINTMENT is prescribed for LS. But I found this dated (2011) PubMed abstract that mentions Triamcinolone. Anyone else using it? I know that an ointment is waterproof (etc). I haven't heard from any of the LS specialists anything else but Clobetasol

Except when I have flares, I use barrier creams every day. I'm okay with using clobetasol twice a week at bedtime.