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I have been diagnosed for nearly 3 years (im 18) -- but have had symptoms since I was 13, scar-like tissue and lesions. All doctors I have been too have just given me stronger and stronger steroid creams but they all make it worse, yea they might heal the wounds faster but it just grows the Lichen Sclerosus as well. I have just stopped taking any medication for a while and it has inflammation cycles, where the skin just comes off really easily and then once it heals it stays pain-free for a couple weeks and then another lesion happens. Really not sure what to do anymore -- I sometimes use this cream called "emuaid" not sure if any of you have used it before but steroid creams just make it worse.
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Guess I'm different cause I'm using. Clobclob and it helping me. Tho I do use soda water and a generic Aveeno and lit helps with the itching.
It kills me to imagine you have suffered with this horrendous disease since you were 13 which is so unfair. I was diagnosed at 62 having lived with symptoms long before that but this thing is notoriously difficult to diagnose in its early stages. The fact also remains that the use of high potency steroid ointment - Clobetasol - is the gold standard of care whether we like it or not and many of us do not like it. It is disgraceful and unacceptable that the treatment options for LS are so limited and inadequate. But the fact remains that this is currently the best option available and to ignore that is to put yourself at risk.
I learned a lot about this disease when I spent months just last year writing a research proposal on LS for a university research post and I got much clearer on the importance and role of high potency steroid ointments in the treatment of LS. My own poor vulva was ravaged by the time I was diagnosed and treated. I still loathe putting Clobetesol on myself but I use it anyway to slow and stall the progress of the disease and to reduce my chance of developing vulvar cancer, which is not a cancer anyone wants to get. And the research informs my decision to do that. Remember too that LS can be asymptomatic – you might feel no discomfort whatsoever and imagine you are in remission – but that does not necessarily mean that the disease process has stopped and this fact can’t be overstated.
I feel your pain and discouragement as a young woman who should be able to look forward to a long and lusty sex life uncomplicated by this misery. I also appeal to you not to give up and to keep talking to your physicians. But protect yourself from further deterioration while you continue your search.
By all means, and please! get mad, stay mad and let your voice be heard on this matter beyond the private conversation we are having here. The world is woefully ignorant about this disease. Talk to anyone who will listen about LS and what it means, get political, do something to help empower yourself, but don’t – whatever you do - hurt yourself in the process. So before you give up on this treatment continue to talk to your physicians and read the research, go on Google Scholar, go the library and tell the librarian to help you read the research, but don’t let your frustration guide your decision. Don’t put yourself at any further risk.
Hello, thanks for the advice. I am actually male if you couldn't tell from my picture. there are no other forums for male lichen sclerosis so I have to post here. Also, you say the steroid cream will stop the worsening of the disease but it just makes my skin thicker and whiter from using steroid creams.
Hi Jules, have you made any dietary changes at all? I dont believe that one's diet causes Lichen Sclerous but I do believe that once you have LS certain foods can trigger flare-ups. Maybe consider starting a food diary to monitor your flare-ups. Some people cut out gluten for a while to see if that helps. Dairy is something you should definitely try not to have if possible, but the biggest trigger of all is too much sugar which can cause almost instantaneous reactions for some of us.
Yea I have recently stopped eating dairy products since I was eating 2 times more than the recommended per day -- this hasn't really changed anything in my skin though. Sugar might play a role, I will think of taking action for that next to see if any changes happen.
Hey ive been steroid cream free for well over a year. I saw no difference in when i as usuing the creams to when im not. Similiar to you i get short bouts of being lichen free but theyre few and far inbetween. I use coco oil as well as emuaid max. Im looking into other ways of healing though. Medical medium has a new book coming out on skin conditions ive listened to some of his podcasts. I am thinking og trying to adjust my diet to see if that helps.
Hi I dont know where you are but in Australia we have something called 'SUDO " cream and its very good to use instead of steroids cream (however they have a place).It has a zinc base and gives the skin protection. Also coconut oil it moisturises the area. Hope thats a little help. I have L planus and LS.
Good Luck .
Most days/ nights I don’t use anything, occassionally I use a dab of coconut oil if I feel any dryness.
I am now on a 21- day elimination ( no gluten dairy or sugar) to try and find the weak link in my immune system that led to the LS. I am determined to heal tjis weak link, stay in remission, and fight off anything else that comes along.
Adding magnesium, vitamin D3, and a B complex vitamin made a remarkable difference in comfort to me.
Hoping you find relief soon.
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