Lichen Sclerosus in Remission??

Posted , 17 users are following.

Hello Ladies - First of all, I want to sincerely thank all 1528 of you in this group forum.  You have helped me tremendously with this horrible condition.  I read all the posts and gather little gems of knowledge from you all, from the questions and responses.  It’s so helpful.  I believe my LS (which I have been struggling with for almost a year now, diagnosed by a biopsy) is beginning to go into remission.  It was BAD.  It is at least finally calming down, gradually.  I have many days now where I feel nothing, no tingling, no itching, nothing.  The white is almost entirely disappeared and my skin tissue is no longer swollen and inflamed (dare I say everything almost looks normal).  I feel 99.5 percent better and everything looks like it’s fully healing.  I am 42 years old.  I had a tubal ligation at the very end of 2016 (which I’m convinced contributed), as this horrible condition began shortly after that.  I have an arsenal of vitamins and supplements, herbal teas and many things I added to and have eliminated from my diet.  Lavender oil was a big game changer for me topically along with Clob (which I use as directed).  Cutting beer, gluten and sugar from my diet has changed my entire world with LS.  “Maple Syrup” someone (an amazing contributor here) I must thank for that beautiful thorough post about diet, leaky gut and inflammation.  It changed everything.  I’ve gathered up all of your ideas and suggestions (from many of you) and complied together what has almost made LS go away for me.  It feels like a miracle.  I know my struggle is not over but whatever it is that I’m doing (wish I could pin point the ONE thing it is), it’s working.  I’ll post here exactly what I’m doing, taking, elimating that is working for me (I’ll post here soon - need to get my kids to school now) but I wanted to start a forum about remission.  As anyone had complete remission (even remission for years etc) and if so, what did you do to make it happen?  Tips?  Ideas?  Might be helpful to us all as I hope my list will be for you all.  I promise to post it here.  I have five kids so I’ll do it ASAP.  I want to be specific to help you all.  It will take time.  Thank you all again.  I’m grateful for this group.  I know I’m not alone, far from it.  

8 likes, 20 replies


20 Replies

  • Posted

    Can you tell me what diet and vitamins you did and used. Did you stop exercising? I am not sure the Clob was ok for was Clobetasol ordered for you ...thank you..
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  • Posted

    Hello all, I'm new to this group after just being diagnosed (but struggling for months).

    been prescribed DERMOVATE even though instruction leaflet says 'not to be used on genitals'?!?

    I've read your threads and just wondering how you are doing now, some months since your posts, and if you still feel well/improved?


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  • Posted

    Hi everyone,

    I have been in remission for many years now, like 5 or so, though I have noticed in the past few weeks some symptoms that LS may be a little active. What really did it for me was ditching gluten. I am strictly GF now, as I have other autoimmune conditions that are very much exacerbated by gluten (thyroid and arthritis). Everything started together after an appendix surgery. I went GF for a year, felt much better, then decided to test so had to eat gluten for two months, and all symptoms, including the LS, came back. After the testing, I went back on a GF diet and have been in remission until now.

    I think gluten is to blame again because I had uncertified ice cream a couple of weeks ago, and since I am also undergoing an arthritis flare up (I was also doing great before), and I am having some light LS symptoms, I think an involuntary but important gluten consumption is to blame here.

    I also have been overworked, so that doesn´t help. For me it´s been as for Mamabear, a multiple pronged approach: GF diet, exercise, nutrition and vitamins, and rest (I have also started yoga and meditation and feel this helps when I´m on overdrive and feeling the autoimmune fatigue).

    Continuity is key. A "touched" immune system is really hard to balance out and demands permanent life changes. But I am grateful in the sense that chronic disease led me to make changes that have made me overall healthier than I would be if I didn´t have to take care of myself the way I do. So, gratitude to my body always.

    I will try to post again in a few weeks to let you now how this flare up after 5 year remission pans out.

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