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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lizralpol | @lizralpol | Apr 10 2:09am

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

keep vaseline in fridge and use cold, so relieving

seniormed | @seniormed | Apr 10 9:42am

When you contact your physician they may try a
different topical steroid that is from another family
of steroid group with different ingredients in case you are sensitive or allergic. The fresh plain petrolatum or
aquaphor is worth a try in the meantime. Most dermatologists are aware of steroid sensitivities and substitutes.

januaryjane | @januaryjane | Apr 12 11:25pm

In reply to @moontree "Yes. The biopsy should only mild sclerosis. The aching burning pain is very uncomfortable for me...." + (show)

It started helping within days. Lay off of it if makes it worse, you could have an allergy or sensitivity. Talk to your doctor.

diamonddi | @diamonddi | Apr 15 9:53am

I am going to check in Kindra, thanks for the tip...

A while back I mentioned a new (to me) dermatologist said I should use Tacrolimus Ointment 2 times a day for flare ups. I followed his instructions and now I have the worst flare up I have ever had.
I went back to Clobetasol and it is getting better.
I will ask my primary dermatologist about this product for sure.

sandy07 | @sandy07 | Apr 28 7:16am

I have the same type of LS that you have - no itching or white patches, just burning. Diagnosed 9 months ago. Pain was intermittent but has been most of the time lately. Was prescribed hydrocortisone when it first appeared. Used it for a week or so and it seemed to help, so I stopped using it. Trying to get in to see gyn this week to get re-checked. Need more information from her and possibly another biopsy. These posts help a lot in knowing I’m not alone and what people are doing to control this condition.

Becky, Volunteer Mentor | @becsbuddy | Apr 28 9:41pm

In reply to @sandy07 "I have the same type of LS that you have - no itching or white patches,..." + (show)

@sandy07 Welcome to Mayo Clinic Connect! I’m glad you found us and have jumped right into the conversation. Please let us know what your gyn has to say!

willows | @willows | Apr 29 8:50am

I suggest, as a fellow sufferer of LS that anything that increases your pain is not something I would continue. It might be too strong for you and be counterproductive. Speak to your doctor about this asap. I have used it without problems but I was prescribed another ointment that burned and did a lot of damage to my skin of the vulva. I had both itching but mostly burning without any white patches. I had nerve damage that was painful as well, from not being treated until late in the game.My biopsy showed extensive scaring but it still took going to 4 doctors before I lucked in on a dermatologist that was competent enough to ask the right questions and give a proper diagnosis and treatment. Good luck finding the right treatment.

willows | @willows | Apr 29 8:53am

In reply to @diamonddi "I am going to check in Kindra, thanks for the tip... A while back I mentioned..." + (show)

I have had the same reaction to tacrolimus ointment as you. The itching was horrible. Had to apply ice compress to relieve it. I also went back to Clobetasol.

rachel74 | @rachel74 | May 5 2:28pm

In reply to @sandy07 "I have the same type of LS that you have - no itching or white patches,..." + (show)

I am glad you will see a gyn.. A WHNP, or PA who has been doing women's health for a long time should have the skills, and knowledge to help.. steroids take about 2 mo to see clearing of LS.. one starts high and tapers down. All these women using coconut products seem to be getting relief.