Tried to put off posting for as long as I could

Hi Maisie

This is an old post but I think you will get what I am going through and wondered if I could talk to you about it all.  Joined the group after seeing your comments. Newly diagnosed with vin3 and a complete mess but having same thoughts you did years back Id love to go through it with someone that "gets it"  , thanks.

Of course. Happy to help if I can. How are you? Obviously a bit stressed. It's always scary receiving such a diagnosis. Then you start to Google things and then you realise that some doctors just operate without a thought to the poor person who has to endure it. Where do you come from and what is your doctor like?

Maisie,

New to this group and cant figure anything out. Is there a way to message you so everyone else wont be bored with my ramble and the continuee notifications! Sorry to everyone else! Jo x

I think the point of the group is that people like to learn about what others are facing as we all have the same thing in common. Don't be afraid to post. If others don't want to read it, they will just scroll through 

ok Thanks Maisie,  Sorry everyone this will be long.

Stumbled across this site when googling everything and anything to do with vin 3 and its been a welcome relief to find others that will understand and Maisie your views are similiar to mine, so here goes...

Back in May I had a few tears around my labia and was a bit itchy where the tears were, there was a small area of redness on inner labia but this bit didnt itch.  I wasnt sure what was going on so went to the dr's, and saw 2 different dr's who told me I had LS and prescribed a variety of steriod creams,  at the same time I changed all my washing powder and toilet rolls as my partner and kids started moaning they were itchy so I wondered if thats what it was.  My tears were definately from me constantly scratching at my labia.  After the change of products and creams within a week everything was good and no itching and no tears and just this small red area I couldnt figure out what was remained. 
After a couple of weeks, now in June - I went back to my dr's about this red area and saw a different doctor and she said something wasnt right and referred me to gynae. She didnt think it was LS.  She did tests for all sti's which came back clear.  
I had a hysterectomy 3 years back due to period issues but they left the cervix and ovaries, and I really thought that was the end of my gynae issues. 
I didnt really understand what was going on as no tears, sores, white patches, no lesions, no itching, nothing other than a small red area by inner labia.
Saw a lovely consultant who did some biopsies and said they would be back in touch.  I was totally confused as didnt understand anything.  Spent a few week googling and putting the fear of god into myself.
Results came in, vin 3 but no invasive cancer, and def not LS.  The hosp wanted me back for a vulvoscopy.  By then I was terrified.  This was 2 weeks ago.  Saw a real rude pig of a man who did the procedure and caked the acid stuff on so thickly it actually burnt all my insides and my doctor has had to try to sort that, but anyway... when I looked at the screen everywhere was white, the entire vulva and all insides.  Everywhere riddled with vin 3.  I fell apart and was crying and he shoved an op form at me to sign and told me I needed an excision.  I was crying so much, partner wasnt allowed into the Hosp because of the covid19 and I never felt so alone.  Rude pig man told me it wont look the same after surgery and his priority isnt the appearance and in his opinion its spread to cancer....bearing in mind my letter dates 10 days before that said no invasive cancer.
I honestly fell apart.  Surgery arranged for 7th Aug.
However since then I have toughened up and done my own research and discovered even if they do the surgery it doesnt treat the virus so whats the point in being cut for it to come back.
My region (East of England) and my local hospitals dont offer lasering, only excisions, and the rude pig man told me cream would take too long to work!  
I now after insisting and pushing have a 2nd opinion appt booked for next Monday - 27th July, with a female consultant at the same hosp, and yet again need another vulvoscopy.  
I am so confused how in the space in 2 months I have gone from a few tears and slight itch - due to what I am sure was an allergic reaction, to now being told basically my entire vulva needs to be removed.
My partner is now allowed with me at next weeks appt as I have kicked up such a stink and I have told them to cancel the op.  I am not having it. 100%.  My partner is fully supportive and we both agree unless this is cancer not to have it.  I dont understand what the point would be when it will come back.
I dont smoke, never have, I have no underlying health conditions, and am rarely ill.   I do however have a very abusive ex husband who put me under alot of stress not to mention violence,  and I am sure thats what affected my immune system.
I am now taking ahcc tablets which I have been on for a week in possibly a desperate attempt to keep this vin 3 at bay.
I am so sorry this is so long, but wondered how everyone is doing now 4 years on, and Maisie have you managed to keep the vin 3 at bay without any surgery now?
I just even now dont understand,  I dont have any sores or lesions, no itching , no more tears, nothing at all and yet they say my entire vulva basically needs removing.
It makes no sense, I dont doubt the diagnosis as I saw it myself on the screen, everywhere turned white, everywhere, but I doubt their treatment plan.  So I am now thinking I might have even had it for years and years and could even have it for more years and years and it might never even become cancer so why put myself through the surgery.
Mentally I know I wouldnt be able to cope afterwards and knowing it could come back I just feel no point.
I hope this doesnt or hasnt offended anyone and just really am so pleased to have found others that will understand.  Thanks for taking the time to read my essay. Jo x

Oh bless you.  I feel your pain and totally understand just how you feel. It is worrying when you Google things and realise how serious things could be. Point being, they rarely are. I am not a medical professional and I am taking great pains here to say I can only speak from my own experience and that I would never be so bold as to tell you how you should progress.

I have read horror stories of people having large portions of their vulva removed, or even entire vulva. I feel pain and horror for those who have to endure this. It must be disfiguring and what it must do for their mental health doesn't bear thinking about.

I had just a sore lesion and no other symptoms apart from a bit of itching. The lesion was removed to make me more comfortable. It was that sample being tested that showed  I had VIN 3. From there I have, thanks to a regional expert doctor been looked after so fantastically. I was monitored closely for 3 years and have now been discharged. My husband checks me over with a magnifying glass from time to time to ensure there are no other outbreaks. If there were, I just would ring our gynae dept at Salisbury hospital and they would see me without delay.  My doctor advised that a huge percentage of people have the HPV virus without knowing it and so it will be until your body is able to get rid of the virus that any biopsies you have will show VIN. It should be remembered that VIN is not cancer, it's a pre cancerous stage, so my gynae always said she was looking for cancer itself. If she were to find any, she would simply remove the cancer, which was likely  to be a very small area and certainly never a need to remove an entire vulva.  She did recommend washing the area with something like epaderm so I wouldn't feel itchy and I did this for a few months and it helped. Now I just wash as normal and 5 years on I have almost forgotten I ever had a problem !  I would strongly recommend that you Google Miss Abigail Kingston and get a referral or a private appointment to see her. She truly is fantastic and I have every confidence in her. Let me know how you get on. All the best

Hi Jo, 

Sorry to butt in but I’m going through this right now too. Your experience with the rude pig man sounds awful. It really is important to get someone you trust and have confidence in. I had an excision but again mine was painful and they thought a cancer may lurking there. It was all VIN3. My margins were positive So I have to use the Aldara cream. I’ve recently had more biopsies which has shown HPV changes. I have never smoked or have any underlying health problems but I am a stress head and I do have a lot of vitamin deficiencies which might be worth checking. It’s a simple blood test to check B‘S and D. I’m now taking a load of vitamins and I have B12 injections. I’m taking the mushroom supplement. I’ve also been advised to have the HPV vaccine. As there is some evidence that it can reduce the risk of recurrence. I hope your 2nd opinion goes well let us know how you get on. 
take care 

Jane45 xx

Hi Maisie,

thank you for sharing your story it gives me some hope that it is possible to have a positive outcome. Is there anything you’ve done to stay VIN free?

Jane45 xx

Hi Jo, again sorry for butting in ladies. I've been part of this gec 2013 but am not very active. I have had 4 laser procedures and have just finished a course of aldara/immiqumod for vin3. I found it so difficult to find any info about this at the time of diagnosis that it made the whole situation even more stressful. also feel free to message me with any questions anytime. Nobody knows this subject better than us ladies who are going through it. I have sent you a friend request on here too. Lots of love to you all.

Claire xx

Typo!! Second line should say I've been part of the group since Dec 2013 x