I am being eaten up with this horrible disease!

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I am sooo worried today.  I have LS in my mouth, lips, back, chest, arms, legs, ankles,feet and the vagina.  Today we are going to decide if the doctor cab rebuild my vagina.  I have had two surgeries to reopen that area and now cannot do that again.  The next step is to rebuild that area.  He has told me to rebuild is a much bigger surgery to have done.  I lost a tooth thus week from the disease in my mouth and now it is on my lips.  Not only does it hurt a lot but it looks gross!  I see people look at it and I know they must be thinking what the heck is wrong with me.  I'm just very tired of dealing with this horrible disease!

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  • Posted

    I am so sorry Charlotte to hear that you are having such a horrible time. I did not know it could affect your mouth and teeth. I think there must be a support group you could belong to, as compared to you my problem seems very small. I am trying Dermaflex cream for contact dermatitis to see if this helps me as it is supposed to heal the skin as well. I bought it in Boots today so have just applied it for the first time as I have decided not to continue with the sterpod cream. How did you get on today at the doctor's?
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    • Posted

      Well the doctor sat back and looked at me and said my case is hard. I have closed totally up in the vigina and he said we will rebuild but not yet. He is now sending me to another doctor that is suppose to deal with the whole thing... Inside....outside.  They have not given me steriods yet because of the diabetes that I have. Now they are thinking of stripping my entire immune system off, but I guess that is a dangerous thing to do. Thanks so much for writing to me!  Thanks for the encouragement. 
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  • Posted

    Dear Charlotte , I have had LS for many years and this year my mouth erupted so I can understand your distress , I was given a numbing mouth wash to help when I ate , only eat very soft foods that won't tear , you might find that it isn't LS in your moth but oral lichen planus your dentist should be able to tell you by the white web like pattern on your gums please don't use any mouthwash with alcohol , what helps me is a a also Alovera mouthwash and brush your teeth with a mild toothpaste this will help with the bleeding oral hygiene is essential it's taken me 3 weeks to get my outbreak to subside,also stress is the key to this too good luck 
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  • Posted

    And all of a sudden I'm allowed in again.  What did the trick?  I won't know.  But I'm in again.  Sorry people, a lament of a different kind.  Program got stuck on me somehow. Would'nt allow me to respond.

    I felt so sorry for Charlotte.  What would help your fight against LS?  Another surgery, or could there be another solution?  If any consolation it is that many are at a loss.  And reading your posting tells again how debilitating this disease is. 

    What are the things, other than surgery, you have tried this far?  Any alternative meds? Would Lycine help you perhaps? (I'm using it, but do not know in how far it helps me.)  Lysine has anti-viral effects against the singles and cold sores.  (Is your liver working properly, do you know?)

    I am using baking powder to brush my teeth, with only a tiny little bit of toothpaste.  It has helped the Lichen Planus in my mouth.  I also avoid spicy food for the same reason.  Any time I forget to watch the spices I get punished and some gums start bleeding. 

    I have no idea what to do with the spots elsewhere on my body.  They just come and stay.

    Wishing you well, Charlotte.     

     

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  • Posted

    Hi Charlotte. Had gynae check it is vaginal atrophy not lichen sclerosis I have. Good luck you have some comments on LS below from other sufferers with suggestions and thanks for replying to my post.
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  • Posted

    Dear Charlotte,

    I am so sorry to hear that you have LS in so many places,I can't begin to think how you must feel, I have started to take a lot of antioxidents just to see if it will help, I also take Acidophilas.

    I wish you well and good luck for the future. Jo

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    • Posted

      i'm with you on the anti-oxidants and free radicals wipe up. Latest on my list is astaxanthin....plus vit c...and others.

      how are you getting on? keep us informed and good luck! 

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  • Posted

    Hi 

      I was recently diagnosed with this horrible disease . I have added Monolaurin , Emuaid homeopathic ointment , Aloe Vera . I hope this works . Have you found anything that have worked , I really hope your condition has improved 

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