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Treatments for Lichen sclerosis besides steroids

Autoimmune Diseases | Last Active: Jan 27 10:08am | Replies (160)

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@joybringer1

I have had lichen sclerosis for over 10 years. My gynecologist advises me to use Halobetasol twice a week and Premarin twice a week; however when flares occur I am advised to use Halobetasol twice a day for two weeks, then once a day for two weeks, and then once every other day. Then it is back to maintenance level. I first used Liidocaine and Prilocaine to numb the area, then she changed it to just Lidocaine. I am now using a compounded mixture to numb. None of it seems to really work. I seem to go from one flare to the next with only a few days in between flares. I am in a great amount of pain. I put ice packs on my vulva for 20 minutes at a time. This disease has ruined my life. I cannot make love to my husband and it breaks my heart. At one point, my gynecologist prescribed Prednisone. I hated the side effects from that. I think she is out of ideas. I need to see her, but I wrecked my car and am not going to ask my husband to drive me to her. I live in the Kansas City area. If anyone wants the name of my gynecologist I would be happy to tell you. Any advice is welcome. I feel so sorry for all of you who have this dreadful disease. Thanks for any help you can suggest.

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Replies to "I have had lichen sclerosis for over 10 years. My gynecologist advises me to use Halobetasol..."

I’m sorry you are dealing with this. It’s life altering. I am finally in a better place... my current regimen: -using liquid organic coconut oil externally each night after showering, -using a compounded formulation of estrogen twice a week and -clobetasol ointment as needed which is now, rarely! When my issues started, I was told to use clobetisol every day- I had so much irritation and dryness- honestly, the coconut oil and the compounded estrogen has made a world of difference for me. I keep the clobetisol ointment handy, but mercifully have not needed it in almost two months!