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scared newbie looking for support and answers

Posted , 5 users are following.

California0599
California0599

I got diagnosed with LS one week ago, i am 19 years old. I first noticed "paper cuts" when i was 13&14 around perinuem area, itchy burning lasted for less than 6 months, then nothing. when i was 17 noticed itchy itchy bum area around my crack and its still here today.  2 weeks ago on vacation boyfriend and i had lights on when he noticed he could see directly into vaginal opening. upon mirror observation, labia minora is nowhere to be found, white spot above clitoris, two paper cuts aside clitorus, labia majora sunken down. major freak out!!! didn't know my vagina had changed any until that point, also didn't notice ANY burning or itching sensation down there at all.  my initial diagnosis i was told Clobetasol will take care of the paper cuts and pigmentation and to put on a less than dime sized amount on finger tip at night and rub over affected area to calm it down. nightly for 6 weeks until i check in with my OBGYN. is her information true? its been one week and i feel like Clobetasol has done nothing and that i have gotten worse, less majora and clitoris looks down towards opening, not like a knob like thing it was before.  As of my sex life, i enjoy it very much, no pain.  will i experience pain in the future? what can i do to prevent anymore "fusing"? 

0 likes, 5 replies

5 Replies

  • lynda166
    lynda166 California0599

    Posted

    That is a good question. I have the same problem. I use the steroid cream for cuts and white patches, but I don't know how to stop the fusing either. I showed my doctor, how the skin has fused she didn't really say anything about it. Hopefully you will get some good responses. Sorry I couldn't be of more help. Just know you aren't alone in this! Best wishes!

  • j02359
    j02359 California0599

    Posted

    First of all, you are not alone and my heart goes out to you because I'm sure you do feel horribly scared.  Those feelings subside and believe it or not will not be with you forever.  You've been given the right advice ie use the Clob every night for six weeks until you see the obgyn.  The clob is to stop/slow down the progression of LS.   You need a referral to someone who specialises in the treatment of LS. Everyone's disease progression/remission is slightly different. Getting to the right person should be your number 1 priority, I think.  And to prevent more fusing, lubricate, lubricate, lubricate.  I use Emu oil but others use coconut oil.  Knock out the sugar in your diet if you can. 

  • hanny32508
    hanny32508 California0599

    Posted

    There are various things that have helped people.  Next to the sterioid cream I started to take baking soda baths (one third of a cup) every other day and rinse with luke warm water with three pinches of baking soda after every bathroom visit.  I deb  dry and then apply a small amount of coconut oil. (to keep the layers separate.) 

    ​A similar thing is the application of Borax. (read other discussion topics on this forum to find out more.)

    ​Then there is diet - someone mentioned to avoid added sugar for instance.  For me I also avoid gluten, and most dairy products. 

    ​I also do dilation to keep the vagina open and to make sure the urethra is not covered over. 

    ​All do not lead to a cure, but make that LS becomes liveable. 

    ​Wishing you well. 

    • hanny32508
      hanny32508

      Posted

      Rinsing goes very well with the help of a Perin bottle, I forgot to mention.
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