Lichen Sclerosus: Any other women dealing with this disease?

It suffer from lichen sclerosis in the genital area. It took 6 months in extreme pain to get the diagnosis. I was prescribed dermovate cream which helped after about two weeks. I was advised by my dermatologist not to use soap in areas affected and given a prescription for dermal shower emollient. I was also advised not to use wet toilet tissue or any panty liners. Since then, I have not had any real flare up from this because the minute I feel a little pain I use the dermovate cream. Hope this helps.

I had flares of Lichen Sclerosus even in my 20's looking back. Of course I didn't know what I had then, but after trying several meds for yeast that didn't help, I started using vitamin B oil that stopped the crazy itch almost immediately. It's worth a try. I got it at a health food store.

Kitten, laser treatments from Coyle Institute in Pensacola, FL work for me for about 2 1/2 to 3 years. Then I have another treatment done. (Tulip Procedure.) He made my vulva and clitoris look normal again without taking away any sensation. It just takes a few days of healing, then I fly back home to AZ.

Dr Coyle was ill, so I recently tried another “reputable” specialist in Phoenix who did a laser procedure, with zero results. LS was back in full force after 3 weeks, and he didn’t take away any scar tissue.
I’ll be going back to Dr Coyle.
I do hope you are able to find some relief. Aquaphor will at least keep the area moist and pain away when urine hits open cuts in the tissue. Use it all the time if you can’t use steroid ointment.
Yours in sisterhood,

You saw Dr Coyle, who I recently saw an ad! I’m new to L.Sclerosis & wonder if I should go there soon or wait out the Clobesterol Oint treatment (twice a day x 2 weeks, then daily x 2 weeks)? The twice daily seems high to me & don’t want to thin the skin in the figure of 8 application (which includes the perineum & anal areas). In 4 weeks, a possible biopsy, if no improvement.
I’d rather have a reliable treatment sooner. I will ask at my 4 week follow-up. So far, a week of twice daily Clobetasol, it did help the itch, but the white skin & rough areas are still present. Most sites I’ve read start with Clobetasol just daily & taper after some improvement. I sure don’t want cancer in that area!

@kewp

Twice a day initially or when there is a flare up is not unusual. That is same recommendation my gynecologist recommended.

You saw Dr Coyle, who I recently saw an ad! I’m new to L.Sclerosis & wonder if I should go there soon or wait out the Clobesterol Oint treatment (twice a day x 2 weeks, then daily x 2 weeks)? The twice daily seems high to me & don’t want to thin the skin in the figure of 8 application (which includes the perineum & anal areas). In 4 weeks, a possible biopsy, if no improvement.
I’d rather have a reliable treatment sooner. I will ask at my 4 week follow-up. So far, a week of twice daily Clobetasol, it did help the itch, but the white skin & rough areas are still present. Most sites I’ve read start with Clobetasol just daily & taper after some improvement. I sure don’t want cancer in that area!

You are misinformed. LS is not a fungal issue at all! Lichen Sclerosus is an autoimmune condition.

You saw Dr Coyle, who I recently saw an ad! I’m new to L.Sclerosis & wonder if I should go there soon or wait out the Clobesterol Oint treatment (twice a day x 2 weeks, then daily x 2 weeks)? The twice daily seems high to me & don’t want to thin the skin in the figure of 8 application (which includes the perineum & anal areas). In 4 weeks, a possible biopsy, if no improvement.
I’d rather have a reliable treatment sooner. I will ask at my 4 week follow-up. So far, a week of twice daily Clobetasol, it did help the itch, but the white skin & rough areas are still present. Most sites I’ve read start with Clobetasol just daily & taper after some improvement. I sure don’t want cancer in that area!