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anyone found there lichen screlosus underlying cause?

Posted , 13 users are following.

OutInSpace
OutInSpace

I know they say its an 'immune condition' which is really vague way of saying we dont know you have this, in my opinion. I know some medical professionals also dont beleive its an immune condition at all, Just wondering if anyone ever found out what it was specifically that triggerd it in them? either through there doc or by own efforts

0 likes, 31 replies

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  • susan43705
    susan43705 OutInSpace

    Posted

    Hi OutInSpace,  My gyn doesn't believe it is autoimmune and had no information except the Clobestol.  I've learned more about LS on this site and googling.  Very little is known and most doctors don't prescribe anything except cortisone and surgery for fusing and some other treatments that don't last long.  I believe it has to be treated from within.  I heard that some skin conditions can be cured with cannabis and that is next on my list to try. You can get cannabis for psoriasis, but not LS.  I think personally they are related.  I am trying to get the cream. The cannabis leaves were used to heal wounds many years ago.  I think there is something to that.

     

  • linda87994
    linda87994 OutInSpace

    Posted

    Hi OutInSpace, I personally have beautiful skin all over and have never had any problems with it until they stopped my HRT after 20 odd years due to hysterectomy.. I have never had any itching, just the white skin and this week my doc took blood as Im battling oral thrush that won't go away. If it was autoimmune they should test us for that and treat the underlying cause. Still waiting to see Gaeny after 4 months. Some people reckon its diet related. Again that doesn't make any difference to me what I eat. I only know that its best to drink plenty water and keep hydrated. What works for one, doesn't work for somelse. Its trial and error I'm afraid

    • Guppy007
      Guppy007 linda87994

      Posted

      Hi Linda, Are you sure it is oral thrush?  I just wanted to mention that I have oral lichen planus and the symptoms of that is a white tongue and white plaques of skin on the insides of your mouth.  
    • linda87994
      linda87994 Guppy007

      Posted

      I think it could very well be Lichen Planus Guppy, my mother had that in her later years. Do you get treatment for that and how was it diagnosed?
    • Guppy007
      Guppy007 linda87994

      Posted

      Hi Linda, it sounds like it could be if your mother had it too.  Unfortunately for me, I had to have a biopsy on my tongue, as it was diagnosed over twenty-five years ago and it was quite rare in those days.  Nowadays unless you want to I dont think it is necessary.  You have LS and your mother has OLP and you have the visual symptoms what more do you need?  Strangely enough, I used homoeopathy to send mine into remission, although that might not work for you.  I used Arsenicum Album.  Look for a homoeopathic doctor and ask for this, its worth a try.  Homoeopathy works well for some skin diseases.
    • linda87994
      linda87994 Guppy007

      Posted

      Thanks Guppy, I would look into homeopathy as everything I have tried on the LS just burns me or comes out in a rash. I seem able to keep it at bay with Aloe Vera Gel at the moment. I will know next Monday when I see the doc again. My tongue isn't too bad. Its my gums and side of my cheeks and tonsils thats affected.

    • karen41728
      karen41728 Guppy007

      Posted

      I was diagnosed with LP about 15 years ago,  had a biopsy didn't have any symptoms until a few years back, it develops over the years, I also had a problem with abnormal cells after a smear test years ago and had colposcopy, the two are connected caused by a virus 

    • susan43705
      susan43705 linda87994

      Posted

      Hi Linda,  I use Aloe Vera Gel too and keep in the fridge so it is super cooling when I apply it.  Almost like novicaine.
    • susan43705
      susan43705 Guppy007

      Posted

      Hi Guppy,  Tell me please about Arsenicum Album.  How long have you been in remission.  Did you have fusing?  that sounds promising.  Did you change your diet? Vitamins?

       Thank you.

    • Guppy007
      Guppy007 karen41728

      Posted

      Hi Karen, once you have OLP I think the chances of getting LS increase.  I rarely have OLP flare-ups thank goodness, do you?
    • Guppy007
      Guppy007 linda87994

      Posted

      Hi Linda, just to clarify the homoeopathy I mentioned is not for the LS, but for the oral lichen planus.
    • Guppy007
      Guppy007 susan43705

      Posted

      Hi Susan, the homoeopathy I mentioned was not for the LS it was for Oral Lichen Planus.  That being said, it might be worth visiting a homoeopathic doctor as they might have something to help the LS as homoeopathy works well for skin problems.
    • karen41728
      karen41728 Guppy007

      Posted

      Yes definitely guppy, did you have any problems years ago with smear tests 
    • Guppy007
      Guppy007 karen41728

      Posted

      Hi Karen, yes I did.  I have never mentioned this before but I did have what they call abnormal cells on my cervix.  My Gyno used a procedure that uses freezing gas (liquid nitrogen) to destroy the cells on the cervix.  It is called Cryotherapy.  This was before I was diagnosed with LS.
    • karen41728
      karen41728 Guppy007

      Posted

      Yes same guppy, the virus is hpv and it causes the cells to change its connected to LP and cell change, I speak  with a few ladies who have all had the same, how old are you guppy, I'm 60 

    • Guppy007
      Guppy007 karen41728

      Posted

      Hi Karen, I'm 56.  It does appear that there is a pattern for some of us.

    • RubySkye
      RubySkye karen41728

      Posted

      Hi Karen,

      Wait. I had that cryotherapy on my cervix years ago too for “precancerous cells”. This was to remove the cells and prevent cancer I thought. My doctor never mentioned having HPV. You mean now I have to worry about getting LP on top of my LS? Is it the freezing that could create the chance of LP or the HPV? I’m 66. How many ladies have you talked to that this has happened to? Fascinating! 

    • sarb73328
      sarb73328 Guppy007

      Posted

      HI Guppy and Karen and others. Ditto re: HPV, colposcopy and cryotherapy (I think. In Uk it was called loop procedure; freezing pre cancerous area on cervix.) It was right after all that that my LS symptoms started. I do believe there is a connection although in what way I don't know. Is it that your immune system kicks in overtime because of the procedures performed on cervix or it kicks in to iliminate HPV? 

    • sarb73328
      sarb73328

      Posted

      I am 65 and diagnosed without biopsy nearly year ago but had cryotherapy followed by LS symptoms approx 4 years before. 
    • karen41728
      karen41728 sarb73328

      Posted

      Yes sarb it was loop excision, the virus stays in your body although the cells are removed, because it's autoimmune it causes other symptoms. Do you have any other problems with your health 

    • sarb73328
      sarb73328 karen41728

      Posted

      Hi Karen. Last smear test (pap) I had came back clear of HPV. My GP explained that most of us carry that virus but our immune systems deal with it. No I don't have any other health issues but with my LS accelerating (mainly shrinkage) I am going back to ask for blood tests which have never been done. However does it make any difference to your LS if you find another autoimmune disease like thyroid probs and treat that? I fear not. As I understand it there is nothing that can be done to actually stop autoimmunity in the body. 

    • susan43705
      susan43705 sarb73328

      Posted

      Hi Sarb,  Please look at the following link with something interesting I found as another possible remedy for LS.  I'm going to try it. Not sure it will work, but anything is worth a shot as I am trying everything on this site that is recommended. I'm seeing my doc next week as they detected a thyroid issue. 

      https://patient.info/forums/discuss/lichen-sclerosis-and-essiac-tea-676453?page=0&utm_source=forum,sendgrid&utm_campaign=comment-notification,Patient.info&utm_medium=email,email#3329491

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