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Misdiagnosed for years

Posted , 14 users are following.

ClareB43
ClareB43

I have seen about 30 Gp’s and nurses over 30 years with itchy, red and sore Vulva. Always told Thrush (even without looking at me) cystitis, menopause related. Swobs, blood tests etc etc etc.

Then 2 years ago after having a tear which turned to a ulcer that grew ( still told herpes) I had a biopsy which came back as LS and Vulva cancer! Wow never had heard of either and neither has anyone else I’ve told! Including some in the medical profession! And those that do don’t know enough! Especially what age you get them!  Turns out I’ve had LS since a child and as not using a steroid or having regular check ups it turned to cancer!

This needs to change!! 

I’m doing as much as I can to raise awareness and hopefully getting things changed with the medical profession! Like training nurses and Gp’s the signs!

6 likes, 24 replies

24 Replies

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  • dancelover
    dancelover ClareB43

    Posted

    Hi Clare,

    So sorry to hear of your experiences with this horrid condition. I so hope you receive the treatment you now deserve to overcome your current situation successfully.

    ?I am a relative newcomer to the problem. When I look back it feels maybe around a year ago I suffered with itching and soreness, so asked the professionals to check it out. They identified LS but no-one stressed the importance of steroid use for the first 6 months....I was advised by my GP it wouldn't cure the condition but simply overcome the itching. By then, the itching was no longer a feature so I didn't bother. I now wish I had. I have been totally confused by the conflicting advice I have received and so have booked myself in with a private dermatologist next week for some definitive answers to my many questions.

    I had never hear of this before and am so distressed. Quite franklyI am panicking beyond belief. 

    ?Anyway, good luck with your progress Clare. I wish you all the best with your goals of raising awareness. I was so embarrassed and felt unable to talk to anyone about it a while back, but am gradually telling close friends and relatives about it and am thinking, like you, that everyone needs to be educated. Maybe together, we can change things for the better and hopefully help eradicate the problem altogether, who knows?

     

    • ClareB43
      ClareB43 dancelover

      Posted

      Find me on Facebook or google my name as my story went viral last year.

      Clare Baumhauer 

      This apples to anyone as there support groups and information I can give you . Message me on messenger 

    • sarb73328
      sarb73328 ClareB43

      Posted

      Clare: Just read your Daily Mail article and thinking how brave you are to spell out what happened to you.

      I admire you and more of us need to spread the word about recognising symptoms and getting the correct diagnosis early. We should all express our concern about this to our GPs at the very least.

  • Bridge_of_Sighs
    Bridge_of_Sighs ClareB43

    Posted

    Hi Claire

    I'm so sorry to hear of your appalling treatment by the medical profession. I was also misdiagnosed for years and was in terrible shape by the time a GP recognised what I'd got. The worst was when I was told by a GP that I was a hypochondriac, without even examining me!

    I've also gone on a crusade of education. I've slacked off a bit now - other life pressures. But one of the things I thought would be useful was to march into every pharmacy with a female pharmacist that I passed, and tell them about LS. I thought that the first port of call for anyone with itching or painful sex would be the pharmacist. I got mixed responses, but a few of the younger ones didn't pretend they knew about it already and seemed shocked enough to say they'd do more research.

    I've written to The Guardian's 'My life in Sex' column, but they haven't got back to me, and also asked Radio 4's Women's hour to do a programme on it. They said they'd done one a few years ago and didn't need to do another. A bit of pressure might change their minds. If anyone else fancied writing in to Women's hour that might help.

    I also wrote to the Pharmacists' body, offering to talk to groups of Pharmacists about this condition. They didn't get back to me.

    MORE knowledge is needed, you're absolutely right. I've told several friends, and one then knew that she should go to her doctor asap when she started itching. Hopefully she's caught it early. Her GP said that 1 in 50 women will get LS. That's not a 'rare' condition is it? And that statistic makes it shameful that there is so much ignorance in the medical profession.

    Keep fighting, keep informing, and keep yourself well too.

    Best

    Bridge

    • sarb73328
      sarb73328 Bridge_of_Sighs

      Posted

      Good on you, Bridge of Sighs. And no, it is NOT a rare condition and anyway why would that make it less worthy of attention? Since you had said about writing to the Guardian column, I have read 'Life in Sex' more and it seems they, like so many other journalists, only want the 'sensationalist' sexual experiences to report. Shame on them, I would have hoped they would see the worth in reporting about LS as it is still so taboo. We all need to keep fighting for recognition so that other women and men are aware that such a disease exists and to look out for it.

    • ClareB43
      ClareB43 Bridge_of_Sighs

      Posted

      Look up Lichen Sclerosus UK awareness on Facebook and Twitter as a few are starting to help raise awareness now! If we all stick together it’s harder to get ignored!  
  • Bridge_of_Sighs
    Bridge_of_Sighs ClareB43

    Posted

    I've just googled you and seen all the articles. that's awesome. you're an inspiration. Let's all try to stop this happening to our daughters too.

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