Dear Vera : ) not sure what name to give you! Thank you for your blog, thank you for sharing, thank you for making me laugh and smile, and it’s so lovely to find someone else who knows what vain3 is… And can identify with the fears, neuroses, anxieties that all the down there things cause…
I’ve just had (5 days ago) a wide excision for vain3 at St Thomas’ in London. Suffice to say, and you’ll know yourself, how little there is in it other than the Macmillan site. I found your blog and comments on jo’s trust website. I have CIN (sin sounds better than vain – as if you’ve brought it on yourself…) but not been treated for that; its stable but the vain steadily progressed from 1-3 in a matter of months. Friends don’t really get it, if you say pre-cancer it’s almost like you shouldn’t even mention it, and I’ve heard it’s not a big deal a couple of times, which isn’t helpful. I think you’d agree with that. I have a very nice healthy hpv virus doing its best or worst down there and I think my immune has been compromised over the last year or so with other health concerns (developed hypertension and am on same meds as my 80 year old dad ! And had a neurological condition which is mysterious and v uncommon (as is vain) called idiopathic intracranial hypertension which I was diagnosed with in March last year and was on horrid meds and then taken off in August. And not felt right since spring 2014 I’ve I’m honest : ))) the people I spoke to at St T said they do an excision once a week so that’s only 52 a year…so it’s not common.
I’m waffling. Just wanted to share – people find ill-health in others boring or hard to talk about… And if you’ve chronic things the sympathy can dry up!
I’m so so sorry you’ve had such a hard time and you’ve been so brave and inspiring and pragmatic and witty in your posts I just wanted to say hello!
I’m feeling a bit stupid – I’m still washed out from the general and in testing phase but wasn’t in pain and I’ve foolishly had a bath (nurse told me I could after 4 days) and my wound is hurting and I’m worried I might have caused infection… I’ll wait till tomorrow and see how I feel. No idea how big or how deep they went. Was starting a new relationship in theory in December but not exactly the kind of thing you drop into chitchat : )) will you wait for me darling..?!
Anyway don’t know you from…Eve… But i send you a big hug and great news re results pre Christmas and long may they stay great.
This time last year I was waiting for a brain scan and then bout to have a spinal tap… It’s all going to be good again – SOON!!!!
Huge best wishes, and thanks again for sharing : )) be well, stay positive and if you need support I’m here too.
Thank you for you lovely comment. It really does give me a warm glow to know my little blog helps connect people (Vainites???) I hope you continue to heal well from your local excision. Vain is a rare beast, not many know about it outside of gyneoncology. My consultant says he does 1 or 2 vaginectomies a year. I hope your excision is the end for you, even though it seems to be a persistent beast. I know St T’s well, my Nan being a Battersea girl. Good luck with it all and do pop by from time to time to let us know how you are getting on.
Vera stumbled across your journey …….I am no where near as far along as you …arguably just at the beginning with the worry of symptoms. …no diagnosis. I felt compelled to say this whole blog is nothing short of epic. I read the whole thing in a night every twist every turn….just wow. Your so inspiring. I wish you all the best. I know your journey is still ongoing but keep doing what you are doing. Your blog is a touch of light relief and humour when people are in such a dark place xxx
Thanks. I love getting feedback. Fingers crossed for good results for you.
Thank you so much for the blog. I live in Bristol and have just been told (dx Thursday – thought I was dying imminently but yesterday told of surgery) I’ll need an ileostomy, hysterectomy and vaginectomy due to localised mucinous adenocarcinoma. If it’s done quickly my chances aren’t bad. I can find very little in the Internet about vaginectomy other than transsexual references. Thank you for sharing it’s really helping me get my head around it. I hope the bleeding is sorted soon and you can relax a little. I’m only getting by at the moment with valium and oxycodone. X
Hi Amanda. I’ve sent you an email. X
This month I was diagnosed with VAIN 3. I am 46 and to be honest, apart from having HPV, I don’t fit the typical history. i seem to have caught the Consultant out and also the Jo’s Cervical Cancer Medical Panel – after being completely reassured it was likely ‘peri-menopausal vagina’…I suspect the finding was a curve ball for all concerned (the previously completely-dismissive-of-my-concerns Consultant reassured me I would be under ‘his Team’ and see ‘him personally’ at clinics going forward). Anyway, tonight I logged onto Jo’s, looked up VAIN and found your Blog. On the one hand, I feel I should be writing to acknowledge your incredible bravery, witty honesty and also the truly fantastic work you are doing to champion the patient perspective. On the other, reading your experiences is giving me insight I didn’t necessarily have before….I realise this diagnosis hasn’t hit home yet…I’m in denial limbo and completely clueless. I’ve been just as dismissive as the Consultant was pre-op (hey, and in the eyes of everyone else, the fact that it ISN’T (quite) cancer means that’s good – right?***!!!). Give me your one best line of advice on living with this VAIN 3 malarky, it’s a key time for me and I’ll keep good hold of it.
Sorry to hear you are going through this nonsense too. What’s the plan of attack? I cannot think of one line to sum up all the questions and decisions you will have to face. Tool yourself up with as much info as you can. Always remember you have a choice. It’s your body, your life. What works for you may not work for those around you. Doctors are amazing but are human. If you don’t think your doctor is amazing in some level change him/her. Life is risk. Trust your gut. Say it how it is. Be yourself.
6 month colposcopy f/up today. Histopathologist could not comment on previous biopsy margins and it seems the blight is still there…so biopsy under local today (gosh, it is ‘burny’ now!). Results and treatment plan in 2/52. Consultant spoke about radiotherapy and also vaginectomy (VaIN is a primary diagnosis and much lower in the vault than ordinarily found in those with previous CIN, so surgery a bit of a last ditch option). Fingers crossed…. but not sure why – neither option sounds a barrel of laughs!!! Hopefully it will be less advanced VaIN but the site was bleeding so perhaps that is not a good sign, not sure? L x
I would go for the vaginectomy over radiotherapy. The side effects of Radio can be pretty brutal. Sorry you’ve had bad news again.
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