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living with Lichen Sclerosus

Posted , 5 users are following.

shazmill
shazmill

hi there.

I have been diagnosed with this condition about 3 years. I

 

0 likes, 11 replies

11 Replies

  • hanny32508
    hanny32508 shazmill

    Posted

    Hopefully you have managed to get things under control.  It's not an easy task, but doable with the generous help from many people on this site.  Wishing you well.
    • shazmill
      shazmill hanny32508

      Posted

      hi hanny32508. It is very hard but we have to try. Thank you. Happy New Year. 
    • hanny32508
      hanny32508 shazmill

      Posted

      Happy New Year to you too.  May this new year bring good healing. 
  • eileen23152
    eileen23152 shazmill

    Posted

    Hi I have recently been told I have LS, my doctors kept passing it off so it took nearly 18 months and several visits before thankfully I saw a locum who sent me straight to the hospital. 

    Everything seems totally ally deformed down there now, and 2 weeks ago I had an operation for a prolapse and a repair. They also had to stretch my uretha to allow the catheter to be inserted.

    I also bleed from my rectum when I open my bowels.

    I also get an issue with my tongue with eating spicy food and as such they are have not given me medication for this.

    This is all new to me I have found at the moment that only the dermavate is helping and anything else burns for about 20 minutes, any advice would be very welcome

    • Guppy007
      Guppy007 eileen23152

      Posted

      Eileen.....with regards to bleeding from your rectum... you may have hemorrhoids, internal ones, which means when you wipe the blood appears on the toilet tissue. I think this is likely a separate issue from the Lichen Schlerosus, and you should be able to pick up some cream or preferably some suppositories from the chemist.  If you have no relief from that then I think you should make an appointment to see a G.I Doctor to discuss further.  Remember blood on toilet paper usually means hemorrhoids, blood in your feces is more serious and you will definitely need to see your G.I
    • hanny32508
      hanny32508 eileen23152

      Posted

      Hi Eileen, you are dealing with a lot of issues all at the same time.  Perhaps of some help:  I too have Lichen Planus in my mouth, therefore spicy food is aggrevating things big time.  I use baking soda to brush my teeth, avoiding ordinary toothpaste.  Seems to make a difference. 

      I'm also using baking soda (three pinches) in the warm water spray bottle I use after every bathroom visit.  Plus I take baking soda baths. (1/3 of a cup)  Very soothing this far.  Using coconut oil to keep things smooth down there. Sometimes use Emu oil.  

      Question: Do you have a permanent catheter?   

    • shazmill
      shazmill Guppy007

      Posted

      Hi. The bleeding is from the front not the back
    • eileen23152
      eileen23152 hanny32508

      Posted

      Thanks for the advice will try the backing powder spray, have been advised not to have baths ( especially since the op because of the stitches) but to shower. Catheter was only in place for 24 hours while I was sedated. 

      My my skin has become very thin and things have started to shrink.

    • eileen23152
      eileen23152 Guppy007

      Posted

      Thanks Guppy007 have tried the creams without sucess, I didn't know if LS shrunk my uretha if it was possible it was shrinking my back passage, I have to use regular laxatives to keep it soft. Will speak to my doctor when I see him next.
    • hanny32508
      hanny32508 eileen23152

      Posted

      Luckily you do not have to have a permanent catheter.  After the stitches are gone you may want to think about baking soda baths.  Good for all of your skin.  I use a lot of coconut oil down there to keep things smooth. (after spray)

      It takes a while before the skin recovers.  Someone mentioned that it may take a couple of years even.  

  • Guppy007
    Guppy007 shazmill

    Posted

    shazmill... sorry you had to  join us here, you will find a lot of very helpful information here...dont be shy to ask, this is the place to get your questions answered.
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