Lichen sclerosis diagnosis correct?

Posted by moontree @moontree, Apr 7 8:15am

Hi, new to the site. I have had vaginal/perianal burning for 6 months.
Culture all negative. Burning comes and go. Redness only. No itching at all. Biopsy finally done showed only “mild” sclerosis.
Told to start on Clobetasol. It’s been a week. It’s making my burning worse. Before the drug the burning was at a 3, now it’s at an 8. To a point I need to wash it off after 30 minutes.
I have no other skin changes. No white patches at all. You would think there would be some other skin changes after 6 months. No itching what so ever.
Does anyone have similar experience? How common is sclerosis without white patches or itching? Is the ointment making me worse?

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januaryjane | @januaryjane | Apr 8 12:22am

Did you do a punch biopsy? For me, this is what I use and works for me but I know it doesn't work well for everyone. I would definitely relay these things to your obgyn and work with them. It doesn't hurt to get a second opinion as well. Hope you find some relief!!

januaryjane | @januaryjane | Apr 8 12:24am

In reply to @januaryjane "Did you do a punch biopsy? For me, this is what I use and works for..." + (show)

Ps- I don't have whiteness either. Inflammation and itching.

diamonddi | @diamonddi | Apr 8 9:14am

I don't have any itching either...only pain, although very tolerable for me thus far because I use Cera Ve to help out my skin. It is very soothing.
I thought I had white patches but they seemed to diminish. Maybe my eye sight isn't so good?
Different story when a flair tho, lots of burning....
I am lucky to have a bidet to calm things down...
I have used the new script for me, Tacrolimus 2 times a day....I don't know if it is better than Clobetasol but it isn't worse.
Next flair I will try Clobetasol again.

januaryjane | @januaryjane | Apr 8 3:15pm

In reply to @diamonddi "I don't have any itching either...only pain, although very tolerable for me thus far because I..." + (show)

Oh I want a bidet. I've been looking into a portable one that would be more cost effective!! I shower every night with unscented dove body wash.

januaryjane | @januaryjane | Apr 8 3:17pm

In reply to @diamonddi "I don't have any itching either...only pain, although very tolerable for me thus far because I..." + (show)

Have you tried a wrap an icepack? This helps me sooo much.

diamonddi | @diamonddi | Apr 8 3:43pm

In reply to @januaryjane "Have you tried a wrap an icepack? This helps me sooo much." + (show)

Haven't tried an ice pack but may some time.....
I love this site...SO HELPFULEverybody's issues are so varied, it is nice to know other people have similar issues.

I have the bidet that is a separate unit next to our toilet. Our spray sprays up. Does not need electricity. It is hooked up to hot and cold water. Installing a stand alone is a BIG deal. Costly to buy, need a plumber. We love it.

I have tried an upscale "add on" toilet seat bidet at a hotel where we stayed. It appears you would need an electric outlet to heat the water? I liked it although the spray was from behind, so keep that in mind. I do not know which spray location is better. Check out the reviews, there are some cheapo bidets out there...What ever you get used to you will be happy.

Installing a

531943rose | @531943rose | Apr 8 6:36pm

I have burning, no itching. Clobetasol works, but after using for 2 weeks, I’m fine for a few days and then it comes back.

moontree | @moontree | Apr 9 6:31am

In reply to @531943rose "I have burning, no itching. Clobetasol works, but after using for 2 weeks, I’m fine for..." + (show)

How do you take care of the burning? Mine feels like a deep ache like someone hit me down there. How long does the burning last each time for you?

moontree | @moontree | Apr 9 6:36am

In reply to @januaryjane "Did you do a punch biopsy? For me, this is what I use and works for..." + (show)

Yes. The biopsy should only mild sclerosis. The aching burning pain is very uncomfortable for me. How long did it take for the clobetasol to work for you? Days, weeks or months? I wouldn’t mind using it except it seems to make my burning worse.

baa11021956 | @baa11021956 | Apr 9 2:13pm

I've had lichen sclerosis for many years. The itching, burning and white patches were awful. My Dr. recommended Colbetasol to be used daily until it was under control. I also started using Kindra, The Daily Vaginal Lotion. What a find! This lotion is truly amazing. If you are dealing with lichen sclerosis, atrophy or just unhealthy vaginal tissue, please look into Kindra. It has helped me tremendously!

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