I just recently found out that I have a condition called Lichen Sclerosis. I had never heard of it and have been asymptomatic except for some whitening of the skin. The lovely thing is that you get it on your privates and it causes a whole list of wonderful things. I'm wondering if anyone lives with this and can tell me what a life with this will entail. I'm not thrilled with the thought of taking steroids and I just would like to hear from people who actually have this and can offer support. Thanks!
I was diagnosed about 3 years ago with it, and have fortunately been symptom free since the diagnosis. There is quite bit of info on the net about it. Don't stress about it, I think maybe that has been the biggest help for me. Good luck!!
Hello C.,
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Be very thankful that it is only lichen sclerosis. My doctor thought that is what I have but it turned out to something very worse called Paget's disease of the vulva. From what I understand, lichen sclerosis is treatable but takes awhile to get rid of it. I don't think it is painful, nor is the treatment.
Good luck!
S.
Hi C.,
I am 45 years old and was diagnosed with Vaginal Lichen Schlerosis when I was in my early twenties. First of all there is a GREAT support group on Yahoo. Just go to Yahoo.com find where it says groups. Typ Lichen Sclerosis in the search box and the group will come up. You sign up and then it takes a couple of days some times to get appproved to the group. You have to also be signed up with Yahoo first. Apparently the Dr. that started the group is stepping down but posted his in depth views and treatment of this condition. It is very important to keep it under control because (and you may know this) it can become cancer. I don't think the risks are high but they are there. I am on vacation and my family is waiting on me but I will tell you really quick that I have mine under control by using Clobetasol. I have had three surgeries and fixing to have my fourth to cut apart where my skin has fused together. I am going to post more later. I will probably just go directly to your contact link instead of doing it here. There is a ton of information on the yahoo group plus support. I know this is a problem that no one understands and it would be nice to be able to talk to someone that can relate. I am not shy about this condition because I feel like by talking about it I might be able to help someone find the right treatment. My daughter is begging me to get off here so I will contact you soon. Feel free to write back. Just know that there is medication to help you. Also they do believe it has to do with autoimune system but they don't know if it is from an over or under active autoimmune system.
I don't think you use enough of the Clobetasol to have side affects. You just put a small amount and once it is under control you only have to use it a couple of times a week.
The Dr. that started the Yahoo group has a book out. Here is the info.
Female Sexual Pain Disorders, a Book By Dr. Andrew Goldstein
K.
Sorry to hear about this i don't think there is a true treatment for this but I do believe it is a immune system disorder. Anyway I can recommend some products that will get your immune system up and running let me know if you want that information ____@____.com
C.,
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