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Fed up going around in circles.

Posted , 10 users are following.

sue162
sue162

I feel fed up today trying to get follow up.  Last week at the emergency gynaecologist he said see me this week being today for follow up and he isn't even there, no dr is.  He told me stop coconut oil and dermovate to clear blisters up and now I have no idea what to out on.  The biopsy has been six weeks and still read in progress on computer so I still don't know anything.  I do worry about VIN. I can't help it.  I feel it needs something on it all but I don't know what.  The blisters have receded a bit but the skin looks like a satsuma skin where they were it looks angry red.  DAM NHS ahead really led me a merry dance and feel so dismayed with it all,  so the biopsy could be two more weeks then a letter with appointment has to come out so I'm all that time not knowing what to put on cream etc wise.  No one to talk to doesn't help.  I've tried to be positive but the lack of follow up care and help is appalling.  Can a biopsy get lost in the system I have read it can,  I've chased Secretary up twice today and rang GP to but the GP had already my last visit.  I just need a rant,  

2 likes, 37 replies

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  • sue162
    sue162

    Posted

    Hi,

    just posting to to help anyone who is suffering.  I got a surprise phone call from the Vulvar Specialist I made an appointment to see yesterday.  He said he had the biopsy results and was disgusted how long they had taken and no one had rung me to allay my worries.  He said no cancer was found.  He said it came back inflammation and no L S he said you do not have L S and do not use dermovate.  He said I have vestibulardynia I think I spelt it right.  Biopsies need taking now if that area.  I asked due to not stopping dermovate the day before biopsy can it not give a false negative and he said no, I thought it could.  The white area he said is age and itching the area over the years.  So I am confused with all this.  Why would painful lesion go if it isn't LS?  Does any one know.  So I have to wait for appointment for two biopsies to be done. cry

    • samantha1970
      samantha1970 sue162

      Posted

      Hi,

      Great news that the doctor called to follow up.

      My understanding is the vestibula is affected. What about your lesions elsewhere? If these were not biopsied before how can the doctor say it's not LS for sure? If they are the same lesions perhaps one biopsy would suffice?

      When I had my 3 biopsies each area came back as something different and non of the areas showed symptoms to the naked eye.

      My understanding is that using dermovate will mask symptoms if there is LS and I've not heard a doctor say before it does not.

      I am pleased your getting answers and I hope relaxing a little x

    • sue162
      sue162 samantha1970

      Posted

      I don't understand it all Samantha.  When I get results from hospital I think I will double check they tested for L S heh.  I read also they say dermovate will mask it but I never got told to stop it.  The lesion biopsied was lower down the right. The vestibule has more lesions and red on it which is very sore.  I definitely think the white area is L S I've never read age and itching making it go white only L S.  I guess I wait for hospital to contact me with a letter.  

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