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lichen schlerosus

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julesjeff
julesjeff

i have suffered with dry itchy skin for years and was finally diagnosed with LS two years ago.  Over the years I have been given different creams to use....Dermovate, Benovate.  I have used that many I have forgotten the names.  I am now desperate this problem has caused the break up of my marriage. I have not been able to have sexual intercourse for over 3 years+ (it was far too painful).  My skin tears and bleeds and going for a pee stings like mad.  It takes up to 3 weeks at a times to clear up (vaseline is one of the soothest things to use I find).  I have white skaly patches too.   I have had this problem so long now that I have vaginal atrophy (the vaginal opening is shrinking). I have been offered a procedure called Fentons to repair the area which keeps tearing (I had this done about 10 years ago and it helped for a while but did not cure it and the procedure was painful).  I had an appointment with the Gynae a few months ago and was offered a new cream called Protopic 1%. This cream stings like mad when applied but I perserved with it.  After using the cream for a couple of weeks my skin flared up again and split (don't know whether it was the cream or just coincidence). I had an appointment to go and see a Dermatoligist while my skin was in this state, only to have the appointment cancelled.  I have an appointment to see a Dermatlogist/Gynae tomorrow and I am desperate for an answer to my problem.  I will be asked if I want to have the Fenton procedure again and I really am reluctant (I have been informed that they can't say for sure if it will help....and if the area there is already tightening surely suregery to cut away the scarred skin wiill tighten it more).  Has anyone found a cream that helps them or is there anyone had a Fenton's procedure with positive results?   Sorry I sound so negative but I am desperate.   

 

0 likes, 7 replies

7 Replies

  • samantha1970
    samantha1970 julesjeff

    Posted

    Hi, I use protropic and personally I prefer it to Dermovate as I found the Dermovate didn't agree with me. I found for the first few uses of protropic the skin reacted to it but my dermatologist asked me to persevere which I did and I'm happy with it now.

    I also use baking soda rinses after each toilet visit, coconut oil and sometimes emu or emuaid. I find with all these tools I'm able to generally keep things at bay. I have also reduced my sugar intake and I have lowered by carb intake for pasta, bread, potatoes and rice.  I do in the other hand drink wine. 

    Good luck with your appointment tomorrow and keep us up to date.

    • julesjeff
      julesjeff samantha1970

      Posted

      Hi thank you so much for the response.  It is really interesting to hear what works for others.  I am willing to try anything.  Maybe I should perserve with the Protopic cream, I will see what the Dermatologist says tomorrow.   
    • samantha1970
      samantha1970 julesjeff

      Posted

      I forgot to mention I also use the borax solution which has helped with some unfusing. There is a thread on here titled an experiment with borax might be worth a read.
  • Bridge_of_Sighs
    Bridge_of_Sighs julesjeff

    Posted

    Please go and look at the thread called 'An experiment with borax.' Some of us are having really good results. Good luck.

  • Irisheyes
    Irisheyes julesjeff

    Posted

    julesjeff, have you tried researching stem cell treatment in Genoa? There is an LS specialist there called Dr Casabona and he is truely amazing. I had the treatment and it reversed 90% of the damage caused by LS. We talked over the phone first then i travelled over for treatment. He did say that as i was just diagnosed and had not yet compromised my skin by surgery he was hoping for a 100% improvement. Please research him and his treatment as its truely amazing.
    • julesjeff
      julesjeff Irisheyes

      Posted

      Thank you for this information and hope you have successful results.  I will research this.  I have had LS for a number of years, unfortunately misdiagnosed and my skin has now been compromised, but I will give anything a try.  
  • hanny32508
    hanny32508 julesjeff

    Posted

    I would suggest you look at the discussion topics regarding borax, baking soda baths and rinses and the use of coconut oil and emu oil, jojoba oil and such. 

    ​My bottom parts have little left of the disaster caused by LS.  Due to regerous treatment with baking soda baths, rinses and applying coconut oil and more recent the use of borax. 

    ​Also leaving out added sugars, being gluten free and mostly dairy free has made my body strong enough to fight LS. 

    ​Add with that dilation to keep all open and hormone replacement. 

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