Anyone have success with treatment for vaginal Lichen Sclerosus?

@frustratedlady50
Has she done a biopsy??
Was it ever confirmed that you had LS? Have you ever been on clobetasol? If she doesn’t do anything then it’s time to find a new doctor. We should not have to suffer. LS is a very real thing & should be treated as such!
It’s not all in our heads!
Why do we have to do all the research and end up educating our doctors on this. LS is exhausting. We need doctors to step up to the plate & learn more about this & help us. Please help us. Does anyone else feel this way?

@rachel74
I was diagnosed with LS visually by my dermatologist in December. Extreme itching & inflammation.
No biopsy. She put me on clobetasol 2x day. After 2 months went back to her. Itching & inflammation cleared up but She noticed an ulcer. Had an appointment with my gynecologist & immediately took a biopsy. Very scary! Hoping i dont hear anything bad. Anxious & frightened. Does any of this sound familiar? Gynecologist told me to stop using clobetesol.
Waiting for results!

@rachel74
Thank you for being the voice of sanity on this topic. I have had to deal with half my life of chronic disabling illness. When I found out I had LS I was determined to move forward, no drama. What you share sounds like what I went through before clobetasol/steroid treatment.
I appreciate your approach!

@rachel74
I was diagnosed visually with LS in December. Was put on clobetasol
I just had a biopsy done due to an ulcer my dermatologist noticed.
A very sore ulcer. Is this a result of being on clobetasol? Waiting for biopsy results. Any insight?

I sure do!

I had a biopsy 2 years ago and learned I have Lichen Sclerosis. I use clobestal too. Sometimes it irritates the tissue if I have diarrhea causing some irritation, but it goes away. I use it twice a week. Perhap twice a day is too much?

@andwho, I have had LS for over 10 years and am presently in flare mode. I must use Clobetasol 2 X daily for 2 - 4 weeks, then once daily, then 2 X a week. I also use Premarin every other day no matter what is going on in the area. I am supposed to use Vaseline in between applying the Clobetasol and my numbing compounded Lidocaine. LS is a horrific disease and it makes leaving home difficult. I suspect I will die with this disease as the flares just keep coming. I had a biopsy and had to have surgery for pre-cancerous lesions. That was painful, but so is life. I hate this "no cause", "no cure" disease. I hope some of you find relief and we can all dream of a day when there is a better treatment than what we are now offered. With all good wishes, @joybringer1

I also have had LS for a long time before even being diagnosed. In December my dermatologist diagnosed me with LS & put me on clobetasol.
In January she spotted an ulcer. Went to my gynecologist & she took a biopsy, turns out it’s vulvar cancer. Just curious what your surgery was like & the recovery. Was it a vulvectomy?
Hope you are on the road to recovery. Any advise?

Absolutely, it is autoimmune and no doctors where I live understand it. I would have to leave city. True of so many autoimmune diseases. Why don't all autoimmune organizations form a coalition to advocate for more funding. We are too busy supporting industrial military complex.

I have had it many years. I found that glycerin soap is best to use, not perfumed or harsh soap. Maybe Neutrogena or Pears. Clobetesol works for me, but you need to use it by prescription on a constant regular schedule and do not miss a month or week, or it all gets itchy and takes months to clear up. Emu oil and emu soap also seems to work sometimes, in between clobetisol weeks. And cotton underwear is a must. Nylon and polyester just seems to irritate it. After many years of every week, the last 10 years my dosage is twice per day for 7 days, one week per month, the same week each month. In addition, Estrogen cream twice per week, every week works for me. They key for me is to be consistent using the clobetesol.