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How do we find doctors that specialize in this?

Posted , 9 users are following.

kb08194
kb08194

Does anyone know if there is a database that lists doctors that specialize in this condition? I have just spent over an hour searching for a doctor in my area that is familar with this condition, but I can't find a thing. This topic isn't exactly something I want to bring up with friends, so I don't know what to do. I live in the US. I am no where near Dr. Goldstein. I need to find some help. I can't go through what I just went through again. 

Thanks!!!

0 likes, 13 replies

13 Replies

  • lizziewizzie
    lizziewizzie kb08194

    Posted

    hi kb

    in the UK the local doctor will refer to a specialist consultant

     

  • Shima888
    Shima888 kb08194

    Posted

    Fortunately here in Phoenix AZ there is a Dr. Brooks who is a vulvar specialist - so deals only with diseases of the female genatalia - I'm going to see him next week.

    His # is 602-265-1112.  Their clinic might be able to refer you to another doctor close to you.

     

    • kb08194
      kb08194 Shima888

      Posted

      THANK YOU!!! I will call them first thing in the morning. I really hope they can help. Let us know how you get on with your appt. next week. I am curious to hear what a specialist will say. My dr. just told me to use clobetasol; he said that was all that could really be done! 
    • Shima888
      Shima888 kb08194

      Posted

      I'm hoping this Dr. Brooks is more imaginative than that but there's never a guarantee.  At least he'll be able to officially diagnose it for me, but there is not a doubt in my mind that's what it is - I just have too many years of this flaring off/on beginning with the start of perimenopause and my low thyroid issues.  I do find that using an antifungal shampoo to clean that area every day will give me good relief - it goes from feeling very stinging to after letting the antifungal shampoo sit there for about 5 minutes the the pain/sting abates and does not return for a few hours. I use Jason's Anti-dandruff shampoo, has alot of natural stuff in in tlike Aloe vera, collodial silver, rosemary, zinc - and it's been my mainstay for several years now.  Taking oral antibiotics/oral antifungals (high dose) has not helped the issue. 
  • suedm
    suedm kb08194

    Posted

    You could try writing to Dr Goldstein in Washington or to the Soc of either gynaecologists (or as spell checker came up with  geologists )and dermatologists, as there will be conferences they invite interested parties
    • lizziewizzie
      lizziewizzie suedm

      Posted

      tee hee....spell check got it right with all the digging thats involved!

      great thought to ask for a copy of the agenda of any forthcoming Conference...then the keynote speakers can be indentified and tracked down. Its the Functional Medecine doctors you really want to locate kb. 

  • athena93317
    athena93317 kb08194

    Posted

    I also live in the US and I have failed at finding anyone that specialises in it I even called Dr Goldstein but an appointment is all out of pocket and it was going to be $1,450 there us no way I can afford that
  • patricia86334
    patricia86334 kb08194

    Posted

    Hello, I live in Western North Carolina,USA. I found two vulvar Dr's who specialize in LS...one works in Asheville, NC, and the one I went to works in Greenville, SC. The dr. In Greenville was more than an hour farther away, but I was able to get an app with her faster. If either of these Dr's is anywhere near where you live, I will be glad to give you her name and contact info. Please advocate for yourself and push for an appt. Wherever you find a dr.

  • kb08194
    kb08194

    Posted

    Thanks everyone. I live in midwest, so NC and SC won't work. Maybe I need to take a trip to that area of the country or AZ....we had snow yesterday, so going south sounds like a good idea. 

    I am going to call Dr. Brooks today and then Dr. Goldstein.I am desperate to get some help.  I am near Mayo, and I hear they have some good doctors that deal with this; however, I understand that it is difficult to get an appt. 

    Patricia, how did you find the doctor you are going to see? Did you find her in a  database? call around? did your doctor refer you? 

    • patricia86334
      patricia86334 kb08194

      Posted

      Hello again...no my dr. Referred me to an ob/gyn. I was OK with her for over a year, but as I read all the letters on this forum, I realized she was not fully informed about LS...she told me to use Clobetasol anytime i felt stinging...etc....and I knew that was wrong....and other mistakes she made made me want a specialist. I went on the internet, put in "vulvar clinics" and my state and zip code and found the two clinics. I went to the clinic websites, scrolled through Dr's at both clinics, found one at each clinic who specializedo in LS. I called each place and made appt with the one who would see me immediately. I signed a paper giving my ob/gyn permission to fax my records to the specialist and asked to have the word "urgent" on the cover page....and I kept calling over and over until I got an appt. In my regular life I am the biggest wuss on the planet, but for LS I was determined to get proper treatment.
    • kb08194
      kb08194 patricia86334

      Posted

      Thanks. I just did a quick search and didn't find anything in my area. Looks like Mayo is my only option. I did find the National Vulvodynia Association. They say they have a list of doctors that work with LS patients, but I have to join for a $45 fee to get the list. 

      I am going to call Dr. Brooks in AZ and see what I come up with. I will report back.......Thanks to all for your help!

    • patricia86334
      patricia86334 kb08194

      Posted

      I also checked out that national vulvar association and also didn't join....I think it is located not far from my location...maybe that is why I actually was able to find more than one specialist. I am having such a hard time typing here...am on a tablet in a motel and it is difficult to get these words right! Keep reading all the letters on this forum and you will know more ab out LS than most drs...then you will be prepared to ask the right questions and get better care.
    • Morrell1951
      Morrell1951 kb08194

      Posted

      The regional gynae I was refererred to just happened to have 1000 LS patients. Stroke of luck. If I were in your situation I might have the nerve to just phone up OB/gyns and aske their secretaries how many LS patients they have. It's free and pretty easy...

      Regarding theDr. above who said there's nothing but Clobetasol – I've been switched over to Protopic (tacrolimus) for a few months now and I have to say it is better, at least for me. I believe I burnt out on steroid creams by using then for psoriasis for 30 years.

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