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Anyone have success with treatment for vaginal Lichen Sclerosus?

Posted by bethdoraine @bethdoraine, Jul 16, 2025

I have had vaginal Lichen Sclerosus for many years with several flareups. I am interested in learning of any successful treatments or recommendations.

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Profile picture for andwho
andwho | @andwho | Mar 1 2:46pm
In reply to @frustratedlady50 "Ive had Lichen sclerosis for about 6 years for sure now, I also have long covid..." + (show)
Profile picture for frustratedlady50 @frustratedlady50

Ive had Lichen sclerosis for about 6 years for sure now, I also have long covid and I only have 1 working kidney so internal meds or not an option. I have flareups about every 4 weeks and no creams have worked. Sex is out of the question as my skin tears and the itching is driving me crazy. My Dr. really doesn't take me seriously, she looks at it when its bad and says "oh we need to get this under control" Really??? then never does anything else. I need something to stop the itch please, any recommendations will be appreciated.

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@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?

REPLY
3 replies
Profile picture for andwho
andwho | @andwho | Mar 1 2:59pm
In reply to @rachel74 "I am a retired WHNP. I treated LS for many women.. Never did a bx. But..." + (show)
Profile picture for rachel74 @rachel74

I am a retired WHNP. I treated LS for many women.. Never did a bx. But it did require high use of a strong topical steroid. I do not like steroids, but this was the only way I ever saw a woman clear her LS. I find the long stories saddens me as to the lack of care and knowledge so many seem to encounter. It did require using the steroids more than once/d, for a time, then daily, gradually decreasing to 3x/wk.. And some had to keep the Rx around in case it returned. The last woman I treated had extensive whitening/LS, and this cleared it up.

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@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!

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Profile picture for jw9
jw9 | @jw9 | Mar 4 1:26am
In reply to @rachel74 "I am a retired WHNP. I treated LS for many women.. Never did a bx. But..." + (show)
Profile picture for rachel74 @rachel74

I am a retired WHNP. I treated LS for many women.. Never did a bx. But it did require high use of a strong topical steroid. I do not like steroids, but this was the only way I ever saw a woman clear her LS. I find the long stories saddens me as to the lack of care and knowledge so many seem to encounter. It did require using the steroids more than once/d, for a time, then daily, gradually decreasing to 3x/wk.. And some had to keep the Rx around in case it returned. The last woman I treated had extensive whitening/LS, and this cleared it up.

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@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!

REPLY
Profile picture for andwho
andwho | @andwho | Mar 4 8:17pm
In reply to @rachel74 "I am a retired WHNP. I treated LS for many women.. Never did a bx. But..." + (show)
Profile picture for rachel74 @rachel74

I am a retired WHNP. I treated LS for many women.. Never did a bx. But it did require high use of a strong topical steroid. I do not like steroids, but this was the only way I ever saw a woman clear her LS. I find the long stories saddens me as to the lack of care and knowledge so many seem to encounter. It did require using the steroids more than once/d, for a time, then daily, gradually decreasing to 3x/wk.. And some had to keep the Rx around in case it returned. The last woman I treated had extensive whitening/LS, and this cleared it up.

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@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?

REPLY
Profile picture for ymelton
ymelton | @ymelton | Mar 28 9:46am
In reply to @andwho "@frustratedlady50 Has she done a biopsy?? Was it ever confirmed that you had LS? Have you..." + (show)
Profile picture for andwho @andwho

@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?

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I sure do!

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Profile picture for 36yrswss
36yrswss | @36yrswss | Mar 29 10:49am

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?

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Profile picture for joybringer1
joybringer1 | @joybringer1 | Mar 30 11:36am
In reply to @andwho "@frustratedlady50 Has she done a biopsy?? Was it ever confirmed that you had LS? Have you..." + (show)
Profile picture for andwho @andwho

@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?

Jump to this post

@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

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Profile picture for andwho
andwho | @andwho | Mar 30 3:22pm

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?

REPLY
Profile picture for lewin
lewin | @lewin | Mar 31 4:10am
In reply to @andwho "@frustratedlady50 Has she done a biopsy?? Was it ever confirmed that you had LS? Have you..." + (show)
Profile picture for andwho @andwho

@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?

Jump to this post

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.

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