VIN 2/3 reoccurrence insights

Hi Tori1234 and welcome to the online community

I'm sorry to hear that you've recently been diagnosed with a recurrence of VIN and I can understand why you'd be anxious to know if this can keep happening.

I don't have any experience with this myself but if you type 'recurrent' or 'recurrence' into the search bar in this group you'll come across a number of posts which talk about it. You could have a read of these and reply to any of the more recent ones if you want to ask the posters any questions.

When you have a minute it would be useful if could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi Tori, did anyone reply to your post? I’ve just been diagnosed with VIN3. I’m going to discuss my surgery today. So scared and concerned about the recurrence even though I’m yet to get rid of this area I have! How did your first surgery go? 

Hi Jane, apologies for the slow reply!

To be honest I was so worried about the surgery and essentially “how it would look” considering I am so young but to be totally honest because of where they took the tissue from, you really can’t tell! I was a little uncomfortable for the first few days and then afterwards I just had to be careful when bending down or sitting in a certain position. I think I was expecting it to be a lot worse so please don’t worry, it’s normal to have that sinking feeling when you think about it but in reality it’s really not that bad.

My doctor has advised the second surgery that I’m getting on Friday will likely be a little more uncomfortable because he needs to cut out two areas, (the original area he cut out in January plus a new area opposite it (VIN 3)) so I am a little more apprehensive this time.

I asked him how it suddenly appeared as VIN3 when the previous tests had never shown it and he said it could have been due to the trauma of cutting out the side which had VIN 2. It doesn’t really leave me with much hope of it not returning as we are about to do the same process again but just need to try and stay positive with it all!

My only hope is the fact there appears to be so many of us with these same issues that surely there has to be something being done in the background to help us cure it! xxx

Hi Tori, thanks for your reply. I’m not coping at all at the moment. All I do is cry.  My surgery is booked for Wednesday next week. I’m so worried because where he did the biopsies the thing has grown back so quickly. Which makes me concerned that once they do the surgery it’s just going to grow back! I asked my doctor about the HPV vaccination he suggested there was no point. Did you get yours done privately? I’m wondering if it’s worth doing at least I know I’ve done all I can to try and prevent a recurrence. This disease is cruel. I wish I could bring myself out of this darkness but I just   can’t. I admire all you people that can think positive I just how I get to that stage! I wish you all the best for Friday let me know how you get on. Are you having treatment in England? 

Hi Jane, aw bless you I was totally in your position in January. I cried constantly I felt sick but once I’d done that for about 2 weeks I just thought I had to be lucky in one sense that it had been caught by my gynae because I had no real symptoms, no lesions or anything so at the end of the day it could’ve been very different. I’ve had a look on google about some clinical trials in the U.K. they are doing which does give me some hope, why don’t you look into them?

I’m from the U.K. but live in Australia so been getting my surgeries done here. My gynae said the same about the HPV vaccine but yeh it’s more peace of mind that you’ve tried everything that’s out there to fight it!

if mine returns I’m also going to ask to use aldara cream and see if that makes a difference, maybe worth asking your doc if it can be tried on your lesions first before surgery? Xxx

Hi Tori,

I just read your post and wanted to share with my story. I have been having VIN3 for about 3 years now and had surgeries 4 times so far and will have another in May. I am 46 yrs and live in the US. I would give it try HPV vaccine since you are still young enough. I wish I could have one but I am over the limit age.

I had clinical trials and aldara cream, but unfortunately both failed. I lost every parts of my vulva but urethra, but still keep coming back! I would try anything I could, but it seems like there is nothing but surgery for me though.  My GY oncology said that my immune does not recognize HPV virus and will not fight somehow and he does not know why my body is like that. I am usually very healthy person and have strong immune system.

I hope everything will be ok for you,

Kuma

Hi Tori, just wanted you to know I’m thinking of you and hope your surgery and aftercare goes well. Look after yourself xx

Hi Jane, thanks for your kind message! I am currently resting up from surgery but feeling so much better than last surgery recovery! Still in a bit of discomfort and haven’t looked at wound yet but overall feeling okay. Good luck for your surgery, please let me know how you get on. I also totally recommend using a travel pillow to sit on/take the edge off sitting/lying down- and just take as many painkillers as you need! I know you’re worried but I promise it won’t be as bad as you think xxxxx