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LS under control after months! :)

Posted , 14 users are following.

MapleSyrup
MapleSyrup

It has been 5 months since being diagnosed with LS. At that time my symptoms were really bad (6 o clock tear, labia minora shrinking, white all around opening, cuts and itchiness). I used clobetasol every day for 3 months (I would either have a quick soak or shower most of the time before applying clobetasol and massaging in for a bit), then after that it went down to two times per week. I rinse after I pee with a peri bottle and then apply either emu oil or coconut oil, and use sudocream when going out for long periods of time to protect skin. At home/alone I never wear underwear and always wear loose clothes. Have been using A LOT of coconut oil for sex and found certain positions to help avoid tearing. The doctor told me she couldn't even tell I had LS by looking!! 

It's not cured obviously but I feel like I am in control of this awful disease. .It's so important to use the clob- it really does help with the inflammation and makes the skin Healthier. And the no underwear thing. I truly believe that has helped a lot. 

3 likes, 49 replies

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  • MapleSyrup
    MapleSyrup

    Posted

    I should mention, I am 31 and have had undiagnosed LS for probably 10 years. 
  • Guest
    Guest MapleSyrup

    Posted

     Hi MapleSyrup very encouraging to read this so glad you’ve got it under control 😃.  I’m waiting on biopsy appointment to confirm LS.  I appear to only have it on perenium and anus with occasional itching but no pain and  so far vulva looks clear.  Washing with dermol 500 and using plenty coconut oil to moisturise.  I’ve been reading so much about this condition through various forums and one minute I feel optimistic and then the next totally deflated.  It seems that everyone has a different journey with this disease .  Trying to stay positive!

    • leslea_03810
      leslea_03810 Guest

      Posted

      Emu oil is wonderful within 3 months no white marks what a relief , please don't forget about emu oil, will help you so much.

    • MapleSyrup
      MapleSyrup Guest

      Posted

      I completely feel the same way, I am still afraid of having another flare up.

      It's best to try something for three months to see if it works. 

  • leslea_03810
    leslea_03810 MapleSyrup

    Posted

    I love emu oil been using it 5 months now and I want to tell all. So keep spreading about this  cream so many are suffering .
    • dawn92459
      dawn92459 leslea_03810

      Posted

      Hi Leslea , is the emu oil you use the emuaid ? I’ve seen this on Amazon  , if so is it the red or blue  jar that is best , quite expensive so wouldn’t want to get the wrong one .x
    • donna60875
      donna60875 dawn92459

      Posted

      I bought emuaid cream didn’t work for me made it feel cool so relief for a hour but then came back with a vengeance might work fir you though I know some swear by it emu oil is better for me but I mix it with caster oil and lavender it’s bddn amazing , every one has something different that they find works for them but not for other hope you find your way soon 
    • leslea_03810
      leslea_03810 dawn92459

      Posted

      Hi Dawn , it is from big w , the biglife co. . Emu oil moisturising skin cream cost 3 dollars and 50 cent. Not sure where you live but i'm in Australia. Watched a show on emu oil it has inflammatory properties in it which made me try it so pleased I did. I'm not cured but  about 90 % better. Hope it works for you. Leslea

    • karen23320
      karen23320 dawn92459

      Posted

      I used the Emuaid Maxx - Red when I was flaring really badly! Then I switched to Emuaid regular ( blue) and only use it if I feel a tingle ( such as when I grabbed a handful of M&M for the first time in 7 weeks). 

    • dixie501
      dixie501 dawn92459

      Posted

      Hi Dawn, I use the Emuaid regular strength. Yes expensive, but I found relief almost immed when I first got it. Try to stop eating gluten for a few weeks and see if that will also help you. I am on a gluten free, dairy free, soy free, sugar free way of eating. No processed foods either. So what do I eat; fresh unprocessed foods. If you can't chase it or if you can't pick it, I don't eat it. Am I perfect at that no, but I do my best and it really, really makes a HUGE difference. It is also called the elimination diet. Since LS is auto-immune, the healthy eating will really make a difference. It's a game changer. The Emuaid and diet AWESOME! you would think your are healed for good, but it is just under great control. Hoping all the best for you.

    • dawn92459
      dawn92459 dixie501

      Posted

      Wow , well done with the diet . Do you use emuaid instead of steroid or alongside ? 
    • karen23320
      karen23320 dawn92459

      Posted

      I would be interested to know if Dixie uses just Emuaid or has used clob to control symptoms? I have only used Emuaid and Emuaid Maxx, everythi g is calm and under control- hv also cut sugar, carbs from diet. Dr gave me a script for Clob and I filled it but hv not used it?! I don’t want to possibly irritate anything. I figured I would use it if and when I flare again? Anyone’s thoughts? I am atrophying on right side, left side still fine, wondered if Clob would stop this? 
    • dixie501
      dixie501 dawn92459

      Posted

      Hi Dawn; I just use the Emuaid and diet. I refuse pharma meds if at all possible, tho I do recognize there is a time and a place for them, but if a natural tx can be used, then why not do that first.
    • dixie501
      dixie501 karen23320

      Posted

      Hi Karen, I only use Emuaid and diet. I stay away from pharmacy as much as possible. I don't believe in them that much. Yes there is a time and a place for them, but if something can be treated with something natural, I do that first.

      As far as stopping the outward manifestations of this horrible immune malfunction, in my opinion, I think unless one can stop the auto immunity, the outward manifestations will continue. They will either be slowed down or very well controlled. Like I said this is only my opinion and from my experience of dealing with auto-immunity issues. 

      If anyone has healed auto-immunity, please let us all know how.  : -)

    • dawn92459
      dawn92459 leslea_03810

      Posted

      Hi , been using emu oil now for about a week , it feels awesome wen you put it on , fingers crossed  , so far so good 😊 

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