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Misdiagnosed for years

Posted , 4 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 Lichen Sclerosus 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! Please be aware for these conditions as well as VIN.  Follow The Eve Appeal on social media or there website to find out more!  And share these conditions so all women have heard of them before like myself you find out in a hospital room!!

1 like, 4 replies

4 Replies

  • beth51904
    beth51904 ClareB43

    Posted

    Sadly. Me too. Vulvar Cancer. I had known I had LS for many years prior. I was just given the clob cream and sent on my way. Never to be told LS can lead to vulvar cancer. I too was told I had herpes when the lesion occured. I want to do my part. I can help raise awareness too. I am in the US. Where are you? 
    • ClareB43
      ClareB43 beth51904

      Posted

      I’m in the UK.

      I hope your doing ok now.

      Follow the Eve Appeal on Facebook and Twitter and share there Vulva Cancer posts is a great start. 

  • Minamii
    Minamii ClareB43

    Posted

    Hi Clare. Oh, your story has really helped bring back some bad memories for me, as well.  I grew up in a small rural community in Outback Australia.  I was born in 1961, and had health problems, various, from about age nine.  Every time I'd go to the doctor I'd be told all sorts of different diagnoses, but the most popular (remember that this is back in the 60's when women and children were supposed to be seen but not heard) was that whatever it was, it would "get better once I had a baby".  Fast forward to when I was 52, and I finally got a diagnoses that explained all the lifelong health problems I'd had - I have Multiple Autoimmune Syndrome, a potentially life-threatening condition, and one of my stable of problems made it almost impossible to carry a baby to term.  I did eventually manage to have my daughter, but only after a series of miscarriages.  So much for the first few doctors' reassurances of pregnancy-related fixes.  I have just been in tears tonight because my specialist has told me that my sight could be in danger - my immune system has mistaken my right eye for a foreign invader and is trying to destroy it.  So it looks like I'll be on sterioidal immunosuppressants yet again, they make me throw up and my hair and toenails fall out.  

    So you have my sympathy, believe me.  

    Minamii

  • Suki_girl
    Suki_girl ClareB43

    Posted

    Vulvodynia is also misdiagnosed and misunderstood. The vulva is a seriously neglected area in medicine. I too am doing my best to rise awareness and help and advise others. Having recovered from vulvodynia I feel I should advise others that it is possible to be pain free.
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