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confused and needing clarification.

Posted , 8 users are following.

vicky2000
vicky2000

I find myself reading discusions, replying and not able to get back to the information. It's probably an operator error. But the tips and advice have saved my sanity. And most likely my marriage. The poor guy has been so patient and understanding. Just putting your solutions and ideas out there has been so helpful.

From some of the expressions and phrases I gather the UK and Canada are highly represented. Because of the different health systems what are you seeing as the "normal" pattern for getting a knowledgeable provider in the US?

1 like, 21 replies

21 Replies

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  • carole65728
    carole65728 vicky2000

    Posted

    Vicky, as I have only just joined this discussion group I am just a beginner but I am finding it very helpful. I have no idea what the situation is like in the U.S. For people with LS.
    • pat48434
      pat48434 carole65728

      Posted

      Hi Vicky,  I live in Florida.  I agree, I have not been able to tell if there are more women with this desease in the States  or not.  I would like to hear more from. us since all products are not the same brands and it can be confusing  
    • vicky2000
      vicky2000 pat48434

      Posted

      I have heard A&D ointment mentioned but that is the only over the counter that's familiar. Then it's off to google and finding the US equivalent.
    • vicky2000
      vicky2000 carole65728

      Posted

      It is helpful. I find myself with many screenshots saving information because I keep getting lost. Guess I need to have a tutoring session with my daughter.
  • gill77081
    gill77081 vicky2000

    Posted

    I live in the UK and can see a lot of posts from the USA and Canada, but I find the advice and tips very helpful.  Most of all it is astonishing how many women suffer with so many problems, which are never spoken about.  I thought I was the only one!  When a product is suggested from Canada for example, there is often something similar in the UK if you Google it.  I also find it strange that dermatologists and gynaecologists give so many different answers, as if no one really knows enough about it.  I am very grateful for finding this Forum.
    • margaret289
      margaret289 gill77081

      Posted

      I live in the UK.  I've just seen a new gyni this morning and finally think (touch wood) that I might be getting somewhere.  I have had 4 biopsies - all of which apparently were less than ideal; one was a cone biopsy, which was not looking in the correct place; the other three were punch biosies which hurt like hell for a while and bled, but the computer system was down and the path lab ended up looking at for the wrong thing - so I have no firm diagnosis of LS. The gyni before last said that he could diagnose by eye that this was LS and that he would monitor it every 6 months.  When I'd heard nothing after 6 months re a further appointment, I rang up to be told that he had just been a locum and I would have to go on another consultants waiting list  Over a year later I was referred.  Reluctantly I have had to agree to another biopsy of an area which is thickening, because it might be turning nasty.  I am well hacked off, but relieved that somebody 'seems' to be paying attention now and if the results are still inconclusive I will then be referred to a vulva clinic, which is what I would like to happen.  There you get the expertise of both gyni abd dermatology but skills applied to some understanding of this part of the female anatomy.  THis forum has been a godsend - I would not have known how to manage the condition properly without it.
    • vicky2000
      vicky2000 gill77081

      Posted

      I feel fairly sure its a guessing game for all but a small percentage of providers. I understand how alone it feels. It's a huge relief to discover i am not a deformed freak that just needs to suck it up. There is a cause and there are things to help.
    • vicky2000
      vicky2000 margaret289

      Posted

      Good grief! I had two cervical biopsies but can't imagine four. You have a lot of patience. The healing is the worst. I felt like wearing a shirt saying just go ahead and kick while I'm down. A vulva clinic?
    • margaret289
      margaret289 vicky2000

      Posted

      Hi Vicky2000,

      yes there are such things, where an interdiciplinary team inform each other and collaborate. 

  • lee12629
    lee12629 vicky2000

    Posted

    Well..i am in the U.S,so far i have not gotton a for sure diagnosis of LS as 2 gynocoligists,1 dermatologist and one general practicioner all disagree..going in again next week.
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