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Information after visit to Vulvar specialist

Posted , 15 users are following.

judy02533
judy02533

I finally had my appointment with a vulvar specialist . First of all she told me that she and other specialists have learned mostly from ladies with LS. She has been seeing LS patients for 20 yrs.  For me ,she prescribed Triamcinolone, 0.1 taken daily for only 1 week.  Then every other day.   I could evidently go to once per week.  She said that if I use less than once weekly I would definitly have a flare-up.  She told me to use Crisco lard three times daily.  Rub inside nightly.  She said that I don't need to use anything else other than the Crisco....only a small amount.  When ladies are prescribed Triamcinolone, is it usually 0.1% or 0.05%?

 

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  • annieflipflop
    annieflipflop judy02533

    Posted

    Judy,

    When I was first diagnosed with LS 3 years ago, I used Crisco which I had to get from the U.S. It worked very well but after a bit I changed to A & E ointment which is similar but had a bit more staying power. Been on that ever since. I found emu oil didn't last long enough. I also started on a weaker steroid with Nystatin and a mild topical antibiotic which worked within a couple of weeks, but I was never able to get the use down to below twice a week. Changed to Dermovate and got down to fortnightly. But have gone back down to the weaker one as too strong and affecting my adrenals as I was getting tingles in my legs and arms at night. This disease is an absolute nightmare. When are they going to do some research on it?!

    • judy02533
      judy02533 annieflipflop

      Posted

      Sounds like I am on the path you were on with the Crisco and Nystatin. The info my specialist gave me recommended either Crisco shortening or A & E ointment.  Info said that the two were similar.  But she told me to use crisco.  Lack of staying power is probably the reason she told me to use it three or four times daily.  How did you know the tingling was from the steroid and affecting the adrenals.  It is a nightmare...there is so much to research.  
    • annieflipflop
      annieflipflop judy02533

      Posted

      Hi Judy

      I also use Dermovate when I am trying to extend my steroid applications which is very soothing.

      I suspect my adrenals are being affected because I only seem to get the tingling problem on the nights I have used the steroid and also it does feel a bit like the feeling one gets after a sudden shock - in the pit of your stomach - and when it's bad, increased heartbeat etc. I'm considering perhaps changing to Protopic as someone else suggested here, but I understand that has side effects too! It's a bummer!

  • bindey
    bindey judy02533

    Posted

    i heard frankincese oil is very powerful and effective in throat and cancer issues. does it sting the labia?
    • Morrell1951
      Morrell1951 bindey

      Posted

      I didn't know that! It doesn't sting me. I wouldn't overdo it. That's why I put drops in jojoba oil, but I'm sure you could put the essential F. oil in any oil.
    • judy02533
      judy02533 Morrell1951

      Posted

      Morrell, I wonder if you could mix it with the Crisco shortening... may be a dumb question ? 
    • bindey
      bindey judy02533

      Posted

      Sounds like a good question to me!

      I am taken with the info you shared at the start that the gynaes/medics are looking to us for recommendations. Thank you Judy for pointing that out.

      I like very much what you said too annieflipflop, (great name!), in reply to Morrell. Its encouraging when any of us find something that works - for ourselves. Especially if it might also help others.

      On this note I'm looking for support to 'try' things differently. I have discussed this with my new medic and she is 'agreeable'...not that its up to her!!  I would like to know how I would be without any steroid at all. I just don't feel the regime is helping me.

    • Guppy007
      Guppy007 bindey

      Posted

      Hi Bindey, maybe we need a new thread, each of us sharing where and when we use the clob, how much, how often, what the results are etc, and when we use something entirely different.   This is a tricky condition to deal with as everyone reacts differently.  I will start one as I think it might be helpful.
    • bindey
      bindey Guppy007

      Posted

      Great thanks Guppy. See you over there! And thank you Judy for raising this topic about crisco shortening, and the excellent review which has followed. Nice to meet you!
    • Morrell1951
      Morrell1951 bindey

      Posted

      Sure, Bindey, why not? I put six drops in a very small eyedrpoor bottle of jojoba oil, so mabne if you mixed six drops into an empty lip gloss jar of Crisco...

      As far as quitting clob – have you given it three to six months? It works very very slowly. It's a longterm thing, not instant symptom suppression.

    • judy02533
      judy02533 bindey

      Posted

      Thank you bindey nice to meet you. I can't believe how much I've learned from all you ladies and in just 3 months.  There is so much more to research on topics that have been brought up here that relate to LS. The info just goes on and on.

      Thanks to all of you...you are a bunch of smart ladies .  I just can't imagine how it would have been for me going in to my specialist without all the info. I got all of you. Three months ago, I didn't know what LS was.  

    • bindey
      bindey Morrell1951

      Posted

      Thank you very much .

      I did have some Frank oil but think I gave it away. It has a curious but pleasant smell?

      You refer to another user who did well with the oil. Can you possibly direct me to the thread? I'm still finding my way around!

      Hmmm Its been three long years with clob. I'm ready for a new strategy!

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