VIN 3

Hi, I'm new to this site but feel like I could really do with some support from people who have had/have the same condition.

I was diagnosed with VIN3 in December and am currently being treated with Immiquimod (Aldara).  I have not yet seen my original consultant so don't know if it's working or not, although looks a bit better to me. 

I'm finding it hard to not let it get it down, sometimes just feels like I will never be normal again!  I am lucky in that my husband has previously had testicular cancer so he is very understanding and supportive.

However, the consultant only gave me 2 options, Aldara and surgery.  I worry that if this treatment doesn't work, I will have to have disfiguring surgery.  I'm trying hard not to look too far ahead and just deal with the situation as it is now but sometimes I just want to hide from the world and not have to deal with work, bills etc.

Thanks for taking the time to read this and if anyone has any advice, I would be very grateful.

Parents
  • I have had a recent biopsy as the dr suspect I may have VIN 3. I am currently awaiting results of the biopsy. I am so worried it may be cancer. 

     

     

  • Hi VIN 3

    I had a wide local excision operation on the 25th January and its been confirmed I have VIN 3 with changes so I'm being referred to a vulval specialist. My own stupid fault as I have left it for 12yrs, because of embarrassment and thought it would go away on its own. I finally had a letter yesterday!! Even though its VIN 3 they can't see any obvious signs of cancer. Since Christmas when I first told the Dr everything has happened so quickly!! It does feel scary and because it's rare there doesn't seem like anyone to talk to. Also when you do search VIN it does come up with cancer. Very confusing. I TOTALLY understand your feelings but our NHS are fantastic.

    Big hugs and hoping you get your results very soon xx

     

  • Hello i was also diagnosed with vin lll  and im now a waiting the opp they think it will be next week. I was wondering if you can help me pls and let me no how you felt after the operation was you in pain could you walk im a single mum so im worrying how il be after   and do you have follow ups. Same as you ive had mine for about 14 years now. When they done the biopsy that was bad enough i cant believe how swollen it was down there and it hurt for like 3 to 4 days. Will it be the same sort of thing or a bit worse as they cutting it away. Hope you had a full recovery and doing well too. X

  • I was diagnosed with vin3 a week ago I have to have surgery. I also would like support and a understanding of what's going to happen. I was just wondering if you had a op. If you have I hope it went well. There's very little explaining of  what vin3 is. Some say it's rare and others say it's because it doesn't get reported to GP'S . If anyone knows more, please share your experiences. Thankyou... Worried

  • Hello firstly i just want to say sorry to hear this. And yes there is hardly no information on it. I have had my opp so i can tell you what to expect im so happy i can help because thats all what i wanted. It was day surgery i went in at 7.30 but didnt go down till 12.30 i was worrying like mad i couldn't stop weeing! When it was my time to go down went into the room where they give you very good pre meds that made me feel nice and before i new it i was gone so that helped so much . Woke up at 2.30 all went ok . I was a bit sore but they give you so much anaesthetic down there to last for a few hours i had stitches.  Was aloud home a few hours later i just wanted out of there . The next 4 weeks wernt very nice the stiches were very uncomfortable and as a week went by i noticed they removed vin in 2 different places it took about 6 week to fully heal down there and for the stitches to fully dissolve. I have my next hospital appointment in march for a follow up ive noticed they missed abit so im guessing il have to have it done again. It looked a bit strange too but in time the swelling went down and it looks normal now. I would say keep topped up on painkillers. Its its on the outside it will heal pretty fast but the one in side took a long time to heal. I found a warm bath helped and when i went to the loo i would get a jug and pour warm water down there im mot going to lie it smelt abit for the 1st week or so as we cant bath to day 3. Its uncomfortable but manageable. I also got bad thrush after the opp found that horrible . Now i feel burning sensation on one of the removal of vin and the other bit where they missed a bit is still itching . Its not nice to go though but they knock you out before you even get to the theatre room so it saved all the embarrassment. All the best and im here if you need to ask any thing. Took me a while to find my log in detail but happy i did so i and you will be able to help more people. I dont think its the end of the road for me but at least they are on it and it was caught very early. Xx

     

  • When they gave me my biopsy results he told me it's precancerous but warned me they may find cancer once they do the surgery. I'm having to go to a different hospital to see a specialist. I'm a bit of a over thinker  and I wish he hadn't told me they could still find cancer. . Did you get warned it could still be cancer. Its probably nothing. They told me 4 to 8 weeks to wait. I might go mad before then. Thanks for replying. Much appreciated. 

  • Yes they told be its pre cancer cell and can turn to cancer any day. Im from ipswich so i saw the gynaecology at the hospital had a biopsy taken 4 weeks later i was called back for the opp in the same hospital.  Maybe your hospital dont have a gynaecology ward? They removed it well they missed a bit but then had a follow up letter to say it was vin 3 and wasnt cancer. I left mine for like 12 years so im taking it takes years till it turns to cancer but it still makes us feel horrible knowing we have cancer cell. I also had cancer cells on my cervix 12 years ago and to have laser and half of my cervix cut away no i have hpv virus and in march i will have to have treatment for that has ive had it for 3 years now and my body has not thought the virus off on its own . But she said hpv could be linked to vin 3 or the vin 3 has formed hpv on my cervix.  Not looking forward to this year at all  . I hope i have helped answer your questions.  No point me saying try not to worry easy said than done. Just be brave xx

  • Thanks. Hope all goes well for you. I won't lie this is so stressfull

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