Information after visit to Vulvar specialist

Posted , 15 users are following.

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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  • Posted

    Seriuosly, Chrisco's Lard?
    • Posted

      Yes, she keeps some in a small plastic container to show new patients how much to use, and how it is absorbed. I haven't used it yet so I don't know if it will be what I want to use, but I certainly am going to try. 
  • Posted

    Hi Judy

    when you say taken daily, is this a cream or a tablet? I haven't heard of it but then I haven't heard of many things until I got LS and came here. I'm interested in your post as I am awaiting an appointment with a vulval specialist in dermatology in another city. I am in NZ and am bound to get different advice and you're right, it seems the specialists are learning from us! Crisco, I guess that's like lard for cooking? Gosh haven't heard that one before.  Let's know how it goes

    Cheers 

    • Posted

      I am in the states. She said that, at this clinic, they had done studies and found that Crisco does very good. They seem to think that if Crisco or the veg oil is used you shouldn't need estrogen cream.
    • Posted

      Lynne, I am sorry, I was unclear.  It is an ointment.  I certainly hope it works..much cheaper and less time consuming.   
  • Posted

    Hi Judy, please tell me how the crisco is doing?  I've read others use vaseline.  Don't know if you read my post about using cornstarch....just seems like dry is better than wet.  I've seen a gynecologist twice and he doesn't seem to know much about it except that it is an auto ammun disease that you can't seem to get rid of.
    • Posted

      Yes I did read your post, and I am going to try that too.  She said that  if I use the Crisco I wouldn't need to use vaseline.  This specialist seems to feel the same about some of the gynecologists.  She was not happy that my gyno did the biopsy after I had been treated with clobetasol. My biopsy was negative, which ended up beng a false negative due to the clob.
    • Posted

      Jeri

      How interesting that you say dry is better than wet! With my LS the dryness is the worst thing as it pulls and stretches and stings when dry and I must always keep it lubricated. Not wet as such, but definitely not dry. Seems we are all a wee bit different with our symptoms.  I use an emu oil from the USA. I also use oestrogen every 2nd day on scar tissue. I am going to a specialist in vulval health soon and hope to get better advice than my gynae who knows little. 

    • Posted

      Lynne,

      I will have to try the crisco.  The cornstarch is slippery and of course dry.  Before I had problems with the skin sticking and a rash from the elastic on the panties too.  Makes me want to go "commando."

    • Posted

      *smiles* at commando! Actually, the only piece of useful advice my gynae said as I was leaving was 'go without underwear if you can'. So shocking at my age of 70! But I did go to a chain store and buy two long skirts to the floor, and I wear them in the evening after my bath with NO knickers 😀 and it certainly feels better! Reckon I wouldn't want to be in a hot country like you  

      right now. Must be difficult in the heat. 

    • Posted

      Hi Judy interested in you post re biopsy being done after Clob use. I had same experience which really confused my treatment for many months. Women need to know to have biopsy first if they can. I didn't find the biopsy too uncomfortable but maybe I was lucky! I wish I gad known because I used Clob for 6 weeks first. My biopsy was "non-specific inflammation"
    • Posted

      That is what happened to me.  My specialist said that I she didn't need to take another biopsy.  She could tell by looking. Have ypu had a second biopsy?

       

    • Posted

      Lynne, I now wear  men's cotton shorts (like boxers) in  large size and love them. Never going back to panties again. Of course I am 72 so don't care, my husband will put up with anything if he thinks it will make me ok for sex!

  • Posted

    I had to reread your post...crisco lard!!  I have heard of coconut oil and emu oil for lubrication, but never have I have heard of Crisco, I wonder why she would suggest that, I am really intrigued lol!!  Maybe she knows something we dont!! 
    • Posted

      It is on the clinic's web site.  She said use as lubrication for sex too.  All I need is crisco and steroid...I certainly hope it works.

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