Anyone have success with treatment for vaginal Lichen Sclerosus?

@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.

My gynecologist prescribed Betamethasone Valerate. After following her instructions I use Calmoseptine (over the counter) to keep urine from irritating the areas.

I have been using clobetesol since the end of November. I have developed a sore. I think from what I read over use of clobetasol can cause sores. LS can cause sores also I’ve read. Is that true? She prescribed silvadene but that burns, when will this end!

@andwho
Yes, it is true that Lichen Sclerosus (LS) can cause sores, as well as tears, fissures, and blistering—particularly in the vulvar and anal areas.

The exact cause of LS is not fully understood. However, it is widely believed to involve an autoimmune component, similar to other autoimmune conditions such as thyroid disease. In women, hormonal factors—especially low estrogen levels—may also play a role, although they are not considered the primary cause.

LS is also often mistaken for Candida (yeast infection), as both conditions can cause itching, irritation, and discomfort. However, LS does not respond to antifungal treatments and requires different management, typically involving topical corticosteroids.

In my most recent reading on LS, including several research papers, I found that:
https://rarediseases.org/rare-diseases/lichen-sclerosus/

@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.

@swalex
Thank you for the information. Since LS can cause sores/ulcers/blisters, should clobetasol be continued to use on them? Thought overuse of clobetasol is what may have caused them Or is there another form of treatment for them? Any advise?

@andwho
In my experience, ulcers or fissures can be caused by active lichen sclerosus (LS) inflammation. If clobetasol is stopped too early, the inflammation may continue, and healing can be slower.

I suggest being tested for possible secondary infections, such as:
Yeast (Candida)
Bacterial infection
Herpes simplex virus

If these tests are negative, you may ask your doctor whether using a barrier ointment such as Vaseline (petroleum jelly) or zinc oxide could be beneficial to protect the skin and support healing.

@swx @andwho
I'm replying to both posts because I'm hoping this helps you @andwho Please know that this information is clear and good. You don't need to look any further! I read your initial post and you wrote that "too much clobetasol can cause ulcers." If you apply it per your doctor's prescription and give your body time to heal, you can have a remission of the ulcers/sores/fissures.

In my experience, @swx and I agree: Without clobetasol there isn't any healing. At this time, we are fortunate to have some kind of healing treatment.

I also addressed the fear and anxiety that can come with a diagnosis of LS. I have worked with a therapist to sort those feelings out. I hope you find a doctor you can trust. This support group is not a substitute for finding practitioners that are best for you. I'm wishing you all the best for peace and healing.