Good afternoon kontikitoo, thanks for your reply yesterday.
I just really sympathise with you having to deal with this for so long, I try to be optimisitic about getting rid of the VAIN/HPV but I am also coming to terms with the fact that I might not. As mentioned previously this new development/potential surgery came as a massive shock after my persistent HPV + mild abnormalities were massively played down (or so it felt to me), so now I feel like forewarned is forearmed, but also a slippery slope into Dr Google anxiety and stress (the thing that doesn’t help your immune system OF BLOODY COURSE) - so it’s a delicate balance. I think, as you say, outside of this you just have to get on and live your life and try and be as happy and healthy as poss.
I think I’m about at the same point as you were when you had your hysterectomy e.g. 3 years in. I feel very aware it may well not solve the problem. When they first mentioned to me a year ago I just burst into tears - I didn’t know I was so attached to every one of my internal organs but I hated the idea of it, it wasn’t about them being reproductive, I was 90% sure I didn’t want kids a that point! I think it just felt like a massive deal, and I still feel weird about it, but it’s amazing how your parameters move isn’t it?
I’m not really clear why they don’t just remove the cervix in such a situation, it seems standard to take the womb, uterus, tubes etc too. Is this just a kind of oh well we might as well and then you’re swerving other gynae cancers too? As I say I feel odd about having ‘extra’ organs removed. It’s on my next list of questions, it gets longer every visit!
With this potential vaginal excision surgery for VAIN2 I am asking to be told exactly what they are proposing to take out, like the size and depth and impact for the future. I just feel like I need more details about what’s being done to MY body. I was pretty shocked when I found out how little of my cervix is left after 1 x Lletz and a cone biopsy, basically there’s nothing much more to take so if I get CIN2 or 3 again it’s hysterectomy as the only option - i didn’t even know that til last month, no one ever told me! I’m realising I’ve really got to advocate for myself because even though nearly everyone I’ve come into contact with has been either lovely or very (seemingly) competent, I’m just another patient and if I want detailed info I’ve got to ask for it. I’m being seen at a London hospital and they are inevitably so busy. I do feel generally well looked after and they do make time for my questions and are always at the end of the phone, but when it’s all new you put yourself 100% in ‘the experts’’ hands no questions asked, and then after a while you’re like ok, actually I HAVE QUESTIONS.
Sending you a massive hug for the moments when you’re having to consider the partial vaginectomy - again it’s those parameters, they move with every development to places you didn’t think you’d have to and couldn’t previously comprehend, I can imagine it’s a continuing mindf***. But, you find a way to do it somehow. I don’t know a lot about it but I’m hoping that the people looking after you are giving you as much info and support as you need. Is it a situation that would involve any reconstruction? Because I’ve read elsewhere on this forum comments from ladies who have recovered very well indeed from that. But I don’t know if it applies in this situation/type of surgery. Feel free to ignore these questions if too much.
Saw a previous post asking for a separate VAIN topic to be set up, I’m with you on that and will be requesting it.
Did you try any of the supplement stuff (AHCC, DIM etc) to try and tackle the virus at source? I mean, I realise it sounds like nonsense but I’m still in a place where I’m willing to try anything in high doses. It feels hilarious to me that I have spent my whole life scoffing at the idea of taking extra vitamins etc and here I am, rattling with pills. I’m looking after my nutrition so well at the mo though that ironically, my hair/skin/nails are looking the best they ever have! So silver linings.
Sorry, bit of a ramble/rant here, I think I’ve just been holding a lot of this in for a long time, and it’s good to know we are not alone. Hope I don’t come off as being too flippant, I have dark humour sometimes. I’m sending you love and best wishes and whatever you decide or have to have done, you will get through it and there will be more light on the other side.
xxx
