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Diagnosed with Vin

FiBenn
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Hi. I recently found a small patch of white skin on my vulvar. I have now had a biopsy and a letter confirming it is VIN. I am going back for a second biopsy next week. I have spent hours on the internet to find info on this condition but there isn't much about. I wondered if anyone has been diagnosed with it? Feel very anxious!

Thank you x

  • Hello FiBenn

    I wanted to post a quick reply to say welcome to the forum although I'm sorry to hear that you've recently been diagnosed with VIN. 

    We do have some information about VIN on our website which may be of help but I'm also aware that there is a supportive private Facebook group for women affected by this condition called "Life with VIN - living with vulval disease". I'm sure that you'll be able to connect with other women who have the same diagnosis and are able to share their experiences with you as well as those here on this forum. 

    You might also like to have a look at this thread by [@Nik-1]‍ who posted recently about being diagnosed with VIN. Hopefully, as I've tagged her into this response she may see your message. 

    If you'd like to talk to one of our nruses at any point you're most welcome to give them a call. They're available Mondy to Friday from 9 am to 5 pm on 0808 800 4040. 

    I hope this helps. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline

    Hi. I'm mandy and following a recent biopsy I have been told I have VIN 3. I am so so terrified. Awaiting  an app with gynecology consultat on 26th to check other lesions.  Also check cervix and bowel. No one understands my fear. Struggling with this. 

  • Offline in reply to Moderator Jenn

    I was told yesterday I have vin I don't know what grade. I previously was told I had lichens sclerosis. But my biopsys said vin. The hospital have already decided I'm having surgery. I'm a little scared. They told me 4 to 8 weeks wait because of backlog of patients. Is this rare or something because there's very little info. Any info would be appreciated. 

  • Offline in reply to Lydick

    Youve probably had your treatment now, just wondering if you've had your v i n removed. Hope you're OK. 

  • Offline in reply to Wellstone

    Hi

    Yes I've had the labia minora removed entirely under local, which I opted fir. Histology has said all VIN 3 has gone now. I feel so much better. 

  • Offline in reply to Lydick

    Hiya, I have been diagnosed with vin3. I was given a choice of surgery or cream after a long thought and discussion with my Gynaecologist he recommended cream 1st so today is day 1 of it, its stinging like hell!!! If this don't work then surgery is the next step, I'm petrified of being put to sleep, I've read yours was done under local was you given a choice xx

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