New to this!

Hi Dormant HPV and VIN and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

It sounds like you've been through an awful lot and I can understand why you'd want to connect with others who understand what you've been through.

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select '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.

Hi Dormant HPV and VIN,

Whilst I can't relate to everything thst you've gone through I wanted to offer support as we all need it x The good news is that they think they've got the VIN following your radical surgery, you've got a new Gynecologist and a fabulous husband. 

I have non HPV related dVIN, lichen sclerosus and have had a cancerous lump removed - stage 1A so I am lucky.  I can relate to some of your feelings as I had to ask my husband of 30 years if he had been unfaithful - even though my VIN turned out to be non HPV related. Thankfully he hadn't but it was important to ask and prioritise my health and possible treatment whatever his response. You too seem to have a solid relationship - don't lose sight of this.

When you husband was diagnosed I'm sure you were there for him whatever and hopefully, he will be for you too. But if you can reach out to even one friend they don’t have to know the exact ins and outs - as I've said my VIN is nothing to do with HPV. Do your friends have to know? I have told a few friends that I have vulval cancer and VIN, and have had surgery. It's pretty rare and not spoken about and my friends had no idea about it. Your friends may be the same. 

I don't have a strong faith but my Mum did and I know she would say that a true Christian wouldn't judge you. There is definitely nothing to judge anyway. With regard to your community, your past is exactly that- in the past. 

I had to choose between radical surgery and wait & see approach with 3 month checks. I chose the latter - I've manged to get reasonably priced travel insurance and we are planning our travels in between check ups. If you can get your pain under control then hopefully you can do the same.

Sending a supportive hug x

Hi Dormant HPV and VIN, 

The HPV virus is so very common, please don't feel ashamed about it. If you really don't feel you can tell your friends, then perhaps don't mention the part about the HPV. For all they know it may have nothing to do with the virus. 

I hope you have managed to reach out for support, but I wanted to say that I am always here to chat. I was previously diagnosed with VIN3 and vulval cancer, so I do understand how difficult things are. 

Take care,

Thank you so much for writing. What is your situation now with the VIN# and vulvar cancer? you used the words "previously diagnosed" so could you share more? Many thanks!

Hi dormant HPV and VIN, I’ve also been diagnosed with HPV in the past on more than one occasion and was informed by my nurse that this is a virus that lives in the body which can flare up but is not an STD disease. Please don’t be embarrassed, some woman are unlucky if this develops into vulva cancer as was I, however it was stage 1 so I had a partial vulvectomy & removal of both left/right lymph nodes with no further treatment required, That was in November last year and although I have nerve damage in my left thigh I’m doing well. I’ve found talking to people on here & my personal Macmillan Buddy really helped me as they have been thru some form of cancer treatment too. Please feel free to talk without being embarrassed on this forum as we all know how you feel too xx

Hi Dormant HPV and VIN ,

Sorry for the delay in coming back to you, I missed your reply coming through. 

Yes of course. My VIN and vulval cancer were removed in 2021. I currently have 6 monthly check up and so far no signs of reoccurrence.