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Nothing works lately. Any ideas?

Posted , 13 users are following.

lisa7788
lisa7788

Hi all,

I would be grateful to anyone that might have any ideas for me!  I have a severe case of lichen sclerosus.  I have fusing of the labia minor with the clitoris hood, and the fusing is progressing.  I have intense, unbearable itch, especially in the middle of the night which makes me tired and sore when I wake up in the morning.  It is making my life pretty unpleasant.  My gynecologist told me I was too severe and agreed with my previous gynecologist that I need to go to UCLA for more specialized help. The itch and fusing are progressing.  The typical clobetasol and estrace are not working.  I have filed an appeal with my insurance company to see a lichen sclerosus specialist at UCLA who does compounding till the right steroids work.  My gynecologists also suggested CO2 lazer and light therapy at UCLA.  Thanks for listening.  By the way, the clobetasol used to work for me a few years back when I was first diagnosed but then stopped working for me.  Perhaps it was due to my going through menopause?   

Lisa

 

0 likes, 36 replies

36 Replies

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  • claire12259
    claire12259 lisa7788

    Posted

    HI Lisa

    Have you tried changing your diet? Cutting all sugar, dairy and gluten. Worked for me and others. Also look into leaky gut syndrome which helps create autoimmune diseases and how to heal it x

    • lisa7788
      lisa7788 claire12259

      Posted

      Hi Claire,

      I have not tried those options. I'll look into it.  Thanks so much!

      Lisa

  • lori64430
    lori64430 lisa7788

    Posted

     Hi Lisa 

     I am 55 years old and I have had LS for most of my life diagnosed at 20 years old  with a biopsy.  After living most of my life with this this is what has worked for me.  I could never use the clob because it irritated my skin severely with thining and burning and rashing. I like you would have an intense itch in the middle of the night and I would scratch all night unaware that I was scratching but by morning I would be in terrible pain because of the damage the scratching had caused. I like you would have an intense itch in the middle of the night and I would scratch all night unaware that I was scratching but by morning I would be in terrible pain because of the damage the scratching have caused.  There is a thing called an itch cycle  and once you get into an itch cycle it is very hard to stop but the scratching causes damage and progresses this condition.  I heard a  doctor say if you can stop the scratching you will stop the progression.  I was determined to stop scratching but I didn’t know how I could stop scratching when I was doing it in the middle of the night unaware.  So what I decided to do was I bought jammy pants with a tie on them and I tied them very tight so as to not let my hand get down and scratch.  It took about one week for me to deliberately not give in to the urge to scratch.  After a week of not scratching the intense desire to scratch went away and it’s like a miracle.  The scratching causes the white patches that build up like calluses to protect your skin. I would highly recommend consciously deciding to never scratch and the healing will begin.  After a night of scratching I would wake up in the morning so raw that my first pee was unbearable.  I hope you find relief and to my  first hand experience this has helped me. 

    • lisa7788
      lisa7788 lori64430

      Posted

      Thanks so much, Lori!  It is so nice to know that people (even strangers) out there care.  I will tonight wear pj bottoms instead of a night gown.  I will be strong and try best not to rub because sometimes I even find the need to rub in the daytime.  I find that same pain you did a lot of the times when I urinate. I hope that what has worked for you works for me, but I know we're all different.  Thanks again, Lori!  I much appreciate your help.

      Lisa

      Lisa

    • lisa7788
      lisa7788 lori64430

      Posted

      Hi again, Lori...

      By the way...do you still use any type of steroid to maintain and prevent a reoccurrence of LS?  I heard that this is necessary to do.  But maybe not for you??

      Lisa

    • lori64430
      lori64430 lisa7788

      Posted

      Hi Lisa,

      What I use everyday is just coconut oil. I moisturize with coconut oil about 2 times a day. I find if I do not have any friction  whatsoever  down there ie, scratching , rubbing,  any friction at all I do not have itching or  irritation or tears.   I remember being a teenager and the inside seam of my jeans would rub there and it would caused a lot of irritation.   And the irritation would make me want to scratch and then further itching would occur because scratching causes more  itching.  It was a vicious cycle.  Not giving into the urge to scratch the itch will help you tremendously.     But you must break the itch  cycle first and that will take about a week.  I remember that there was no better feeling in the whole wide world then scratching down there,  but the damage that it was causing was very painful.   It was so pleasurable to scratch that part of me didn’t want to give that up because it felt so good while I was doing it but the damage was causing more pain than the pleasure of the scratching.  

    • lisa7788
      lisa7788 lori64430

      Posted

      Thanks, Lori!  I'm so glad I joined this forum.  I'm getting great ideas.  You're right about how it feels so good and then feels so horrible later on.  I need to not give in to the temptation!  Oh...that is difficult.  Like you and somebody else previously on this thread said, after a week of no rubbing, maybe things will get better.  I find myself sensitive to the coconut oil so I think I'll do what you say but with Aloe instead.  Thanks again for your help!   Lisa

    • lisa7788
      lisa7788 lori64430

      Posted

      Regarding my last message to you...oops...I said somebody else besides you mentioned to stop rubbing for a week, but just realized that the somebody else was you!  wink
    • lisa7788
      lisa7788 lori64430

      Posted

      Hi Lori,

      I am bummed out this morning because I rubbed the area last night.  I was good all day until that one momet late in the night. The itch was so intense!  If you have any other ideas to stop the itch I welcome it.  I might try the water bottle idea by my bedside that somebody in this post mentions.  She said to place it between my legs at night when I have the urge to rub.

      Lisa

    • lori64430
      lori64430 lisa7788

      Posted

       Hi Lisa 

       I know exactly what you mean about waking up and realizing that you had scratched all night.  We scratch when we are asleep and do not realize we are doing it therefore it is very hard to stop.  I know for me I had to find a way to not allow myself to scratch when I am sound asleep and not knowing what I’m doing. I had a time of putting on gloves on my hands at night and that actually worked for a little bit but then I found myself taking the gloves off in my sleep and scratching.  So I finally came up with a great solution which was to wear jammy pants that I could tie in a knot at night to prevent me from untying them and getting my hand down there to scratch and do damage.  That has worked and since I have stop scratching in the middle of the night all of my symptoms have gone I have no itching I have no white spots and I have no tearing.  I am married and have not had sexual intercourse for 18 years.  So I have absolutely no friction down there at all and that has kept all of my symptoms away.  Tell yourself every night before you go to bed I will not scratch I will not scratch and then Tie some jammy pants up real tight.   After five days of not scratching the urge will be gone and you will notice your vulva is pink and supple.  Then put coconut oil on during the day before you go to bed.  We have to be deliberate and not scratching because the scratching causes the damage.  A doctor once told me if you can stop the scratching you stop the progression.   I’m pulling for you Lisa!! 

    • lisa7788
      lisa7788 lori64430

      Posted

      Thank you so much, Lori.  I appreciate your support!  I am going to buy Aloe today to use instead of the coconut oil because I am sensitive to the coconut oil.  I will try to be strong!  Sometimes I can't think of anything else because the itch is so overpowering.

      Lisa

    • karen23320
      karen23320 lori64430

      Posted

      Lori - I have to disagree that the scratching causes the white patches. I have never once scratched down there and I hv white patches. I used Emuaid and hv no more pain or itch and hv been using clob for  about two weeks to clear up the white patches. I believe that they are just a symptom of this disease and are not caused by scratching. 
    • lori64430
      lori64430 karen23320

      Posted

      Hi Karen!

      That is so crazy because I have only gotten white patches from scratching. I wonder if it effects us all a bit different. My white patches were definitely thick scar tissue that I would get from scratching and then I could literally peel them off after about week of not scratching.  Are your white patches thick or are you talking about the white color of the skin that is white and shiny? I find this so interesting because I have had LS for 35 years and I only would get those thick white itchy pads from scratching.  Thank you for this information it’s very interesting to me.  So have you never had an intense itch that you would scratch all night? 

    • karen23320
      karen23320 lori64430

      Posted

      Hi Lori- No, I hv never had the intense itch that you all talk about, if I start to feel tingly or a little itch ( usually if I eat sigsr or wheat- chicolate!) I will put some Emuaid on there and it goes away. I do mot think I hv patches of thick white skin, just the white, shiny skin you get will LS. Diagnosed 3 months ago and I do not scratch. I use Clob 1-2x a day for the last 4 weeks  to try and get rid of the white skin. Nancy KB talked about a cotton ball soaked in water/ borax on white skin for 30 min daily to “ pink it up”- will try that next. Will let you know
  • jeri24294
    jeri24294 lisa7788

    Posted

    Hi Lisa,

    I am so sorry for your misery...we have all been there to some extent.  I have read this before and totally believe in it.  I would suggest that you make a saturated mixture of the Borax in water...saturate a wash cloth, warm it in the micro (if you don't like cold) and just lay the cloth on your "area"...and leave it for as long as comfortable.  Repeat as often as convenient.  It really makes a difference in my case at least.  Hope it helps you.

    • lisa7788
      lisa7788 jeri24294

      Posted

      Thanks so much, Jeri!  I will try that.  I appreciate your support and advice.

      Lisa

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