Hi

I had surgery for VAIN 3 a few years ago at the same time that I had CIN 3 removed but I was never offered a hysterectomy. I also have HPV that my immune system has never been able to shift. 

I was diagnosed with Vulva cancer last year and I finished treatment in August of this year. Have they said if the VAIN is widespread? I'm happy to chat if you have any questions.

Xx

Hi Haylzz (hi Dempsey),

I saw your post and wondered if you'd be happy to talk to me? I've been diagnosed with VAIN 3 and CIN 3 - though cancer hasn't been ruled out - and am currently waiting further examination. Are you able to tell me more about the surgery you had? I've been told that if I don't have cancer then I'll need a hysterectomy, and also possibly the removal of part of my vagina, which scares the life out of me. Did you have this surgery? Would you be happy to have a chat about it, and the recovery etc? 

Thanks so much

Hello!

Thank you for taking the time to reply. The hospital were originally planning to remove my abnormal cells under general anaesthetic too, but realised, after they'd knocked me out, that the cells were too widespread to be treated in that manner. So, I've been told it'll be radiotherapy and possibly chemo (if they decide I've got cancer), or a hysterectomy. And I'm ok with either to be honest, but I'd quite like to crack on with treatment so I can stop thinking/worrying about it. I was first referred in Sep and it's been slow going.

I was sorry to read about your vulva cancer diagnosis. Was this related in any way to the earlier treatment? I hope you're doing ok now? 

Thank you for the offer of a chat; I might come back to you on this if that's ok? Got another hospital appointment next week when hopefully I'll learn more about treatment and it'd be good to speak to someone after that xx

Hi

In a way it was related......all the pre-cancerous changes I've had over the years (on my cervix, vagina and vulva) were all caused by HPV so although the vulva cancer didn't develop from any earlier treatment, it has all been caused by the same virus if that makes sense. 

There were big gaps between my treatments as well. Although I was diagnosed in October I didn't have my first surgery until February,  then my second surgery in April and I didn't start radiotherapy and chemo until the end of July. 

I hope your appointment goes well next week. You can message me whenever you like....I'm always checking in on here.

Xx