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Lichen Sclerosus: Any other women dealing with this disease?
Autoimmune Diseases | Last Active: 4 days ago | Replies (323)Comment receiving replies
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!
Replies to "You saw Dr Coyle, who I recently saw an ad! I’m new to L.Sclerosis & wonder..."
FYI: Clobetesol is a steroid and over time it will thin your skin. Ask your doc about Clotimazole. An antifungal. After all, lichen sclerosis is a fungal issue.
Read more from Mayo Clinic here:
https://www.mayoclinic.org/diseases-conditions/lichen-sclerosus/symptoms-causes/syc-20374448
The pain, itching and patchiness of lichen sclerosus may be similar to symptoms of a fungal skin infection. However, lichen sclerosus is not linked to a fungus, virus or bacteria.The exact cause of lichen sclerosus isn't known. It's likely a combination of factors, including an overactive immune system, your genetic makeup, and previous skin damage or irritation. Lichen sclerosus isn't contagious and can't be spread through sexual contact.
@kewp yes, that’s a normal dosage of Clobetasol. My Phoenix urogynocologist also Rx Estrace 3xwk to be used on inner labia and figure 8 perianal region to help keep skin from thinning. You can always use Aquaphor in between times just to keep moist, and prevent injury to the tissue. Another cream I was Rx is Silver Sulfadiazine 1%, after a vulvar laser treatment. I use it on lesions that just don’t want to heal.
As far as seeing Dr Coyle, if you aren’t too far from him, I’d see him sooner than later. I first saw him when I felt completely hopeless and was amazed by his Tulip Procedure treatment and that he brought back my anatomy again, stopping the LS for a long while. I’ve had more than one treatment by him. It’s been 5 years since the last and I need to go back soon. (Last year my highly rated urogynocologist in Phx did two costly laser procedures with big promises and zero results. The LS was back in full force within 4 weeks. I won’t be making that mistake again.
I’m sorry you have this diagnosis. Just know LS IS manageable, and look to this forum for helpful ideas.
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@kewp
Twice a day initially or when there is a flare up is not unusual. That is same recommendation my gynecologist recommended.