Recently diagnosed with Lichen sclerosus. Feeling nervous about future treatments.
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It was a shock to realise that the dreadful itching was more than thrush. I had never heard of lichen sclerosus. Even though the chance of developing cancer is small, it still scares me.
0 likes, 33 replies
karen23320 caroline96176
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Google Dr Goldstein’s webinare and he will discuss mwdical approaches, future treatments, side effects, show pics ( graphic) , but let you know what you are in for. Good luck and hang in there!
caroline96176 karen23320
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Thank you so much Karen. It's so helpful to read about how other women cope with the news. I will read as much as I can and try to stay calm. Thanks again. Caroline
charlotte44963 karen23320
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karen23320 charlotte44963
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Lostgem66 karen23320
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karen23320 Lostgem66
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There are so many great suggestions on here to try, I wish you good luck and know we are all here for you! ❤️
Wee_Dugie Lostgem66
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Hi, I am wondering whether you have seen a Specialist at all in the last year? Clobetasol should be doing you some good at least - unless you are (were) not applying it frequently enough, or, not working it into the skin to get a dermatological benefit.
While I am a male with LS - you need to see A Vulval Conditions Specialist, or a Gynecologist who is very familiar with LS. I would say if you have ulcers that are not under control, you need to have this attended to urgently by a Specialist - if you are in the UK, you may have to travel to another NHS region to find such a Specialist. Please don't be put-off by a Doctor (your GP I presume) who may tell you there is no such specialist in your area - through the stipulations of "NHS Choices" everyone has the right to see a Specialist in a particular region of the country. In the USA, Vulval Conditions Specialist are more commonly available, perhaps?
karen23320 Wee_Dugie
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Don’t give up, don’t stop learning and never stop fighting for yourself and everyone else who suffers!
Wee_Dugie karen23320
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We men with LS get-off very lightly compared to the majority of Women suffering with the differing Lichen Conditions. As I say, other than the Clobetasol, the only things I have needed to do is to keep any chemicals, particularly oil-based ointments, skin creams etc away from the affected area of my penis, wash undies and towels with liquid soap flakes and maintain a pristine penile hygiene regime in which I wash with water only, then ensure I am 100% dry afterwards.
Thanks for the encouragement too, I will keep doing my bit to combat this awful condition, and pass-on the recommendations you inspirational Ladies suggest on this Web Site
Lostgem66 Wee_Dugie
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I just saw a GYN who I’ve been waiting to see for over a month. It was a waste of time. Her nurse basically wanted to why I was there ... couldn’t my PC treat me. The GYN has no help for me since I’m not benefiting from the clobetasol. She said I should be using it every single day for the rest of my life. She did give me a referral to a specialist at the U of Washington. I’m not hopeful. There should be a vulvar specialist without having to go to a university. I wish the US. had a directory. All I find are dermatologists and my internet searching is frustrating. This is so so miserable 😔
Lostgem66 karen23320
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karen23320 Lostgem66
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I did buy coconut oil as a moisturizer, and will use when I don’t feel any tingle.
I currently take Ultra Women’s formula multivitamin, a combo Vit D/ K, folate, boron, selenium, Vitamin A and Tumeric in AM. At night I take Calcium and Magnesium. I hv eliminated sugar, cut way back on carbs and follow a low- oxalate diet ( no multi-grains, no nuts, no seeds, limited dark leafy greens, no chocolate, no peanut butter and limited berries).
karen23320 Lostgem66
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I have to disagree with your Gyno who says to use Clob everyday for the rest of your life- my Dr. wrote a script but told me I didn’t hv to use it until/ unless I flare again. Daily use seems like it would really thin the skin , make it more prone to tearing and irritation, and why use a steroid 8000x stronger than hydrocortisone when Emuaid or Aloegel with tumeric oil can soothe just as well? You need to see a different Dr. And you need to keep asking questions, don’t just take their standard- quo as the best treatment for you!
Lostgem66 karen23320
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Lostgem66 karen23320
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jeanniej karen23320
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Your post was helpful. I was treated for LS over a year ago and then it pretty much subsided, so I discontinued creams, etc. Now I find it is back, worse than ever. I am looking into the Emuaid Max which I can buy online, but the site I am looking at says it isn't for internal use due to the ingredient Tea Tree Oil. And where I would have to use it, is pretty much "internal!". Have you or anyone else had any difficulty using the product in this area? Thanks
karen23320 jeanniej
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