Wasn’t really sure where to post this so plumped with here.

I really need some debate. I know no one will be able to give me the right answer but intelligent questioning from strangers is what I need right now!!

Just back from my Pre op. Knew it would be awful because, quite frankly I’ve been in denial about my upcoming surgery and knew that today would be the ‘wake up call’

Saw my Lovely, lovely consultant. Wish I could bottle him for you all!

They want to do a partial vaginectomy. I’ve already had a radical hysterectomy for 2a CC. And a wide local excision a year ago for VAIn 3. This was to ‘cure’ the vain 3 but obviously didnt work. But it was a minor op and really not too bad at all.

My Vain 3 is back, and has quickly progressed from VAIn 2 in the summer. Therefore MDT has decided that to remove upper vagina (Upper of what I have left) is the way forward. The reasoning for this is to reduce the risk of it turning into vaginal cancer. As vaginal cancer is rare, and Vain even rarer, No one knows the percentage risk for this. But he believes my risk to be between 1 and 10 percent. IF it became cancerous it would require radiotherapy which for the vagina is very grim. And of course the risk of invasion and metastasis.

The risks associated with the surgery are a 1% chance of ending up with a fistula between rectum and vagina or vagina and bladder resulting in colostomy/stoma bags. This I absolutely do not want.

There is also a considerable risk of losing my ability to have pleasurable penetrative sex.

I wouldn’t sign the consent form and lots of tears were shed, and surgery is due Friday. I have told him I will ring tomorrow if I decide not to go through with it. My head feels like it is absolutely about to explode…

Thoughts? Hit me with them. Because that’s what I truly need right now.

Oh god iv re read your post a few times and really don’t know what to say!! Iv actually just read it again and I just don’t know.
Sorry I’m going to be no good to you what so ever but I’m passing on a great big hug though my phone xxx
Personally I think the surgery would be the route I would take in case it does turn into cancer but its so easy me saying that when its not me and you have gone through so much already, you must be a brave lady :slight_smile: I have a hystermectomy next week and I’m totally craping it already!! Then I read your post and think I’m pathetic.
I’m sorry I’m no help and I really hope others can put more constructive info your way.
Best wishes
Jo xxx

Hey 365

You didn't sign the form, that tells me you're not ready for surgery. Can they not postpone it? Give you more time? It's major surgery after all. I've been told that the chance of VAIN turning malignant was 1in 10, IF you've had previous CIN/CC issues. AND it could take 15-20 years... BUT, it obviously might not. In my opinion there's just not enough research / results to make an informed decision, therefore you need to go with your gut. Really feel for you, wish I'd had my specialist appointment by now and I might have been more use x

Thank you. You are certainly not pathetic! It's all scary stuff. 

I almost wish they said 'It's cancer' because the decision would be a no brainer.

Your hysterectomy is booked on the same date I was diagnosed. Never a good time for Cancer but I emphathise being another Christmas cancer girl. Good luck and thanks again.


He offered me a date after Christmas, but I can't have this hanging over me any longer, I'm already a mental mess.


It's all the IF's and buts isn't it. He said to me today that differentr people have different ideas on percentages of it turning to cancer. His belief is between 1 and 10%. My other consultant said 2% year on year. 

The things stacking against me are my history of cancer, they know my body can make cells invasive and the persistance of it. 

Like I said up there, I almost wish they said 'It's cancer' as it would then be a no brainer. He says that cancer being there is 'unlikely but possible' He also used the words 'worrying' and 'should' quite a bit. So without saying so directly  it appears he is very keen for me to have it done. 

To be honest I think I'm just scared of more surgery (who wouldn't be?) and quite frankly fed up to the back teeth with it all. 

Did ur consultant mention a laser skinning colpectomy? I've been reading about that... Far less invasive than a vaginectomy and trials have shown it can be successful for VAIN2/3? 

Not sure how helpful I'm being... And I'm sure you've already researched it!

That was offered to me in the Summer. I didn't take it (Vain 2 at the time) wanted to see if it would get better on it's own. I think this is the concern that since June it has got significantly worse and laser is no longer an option. I also have about 7 spots of it so quite a substantial area. I also think that there is a concern that there is microinvasive cancer lurking which I'm not sure a laser procedure would deal with adequately. My cervical cancer was a stage 2a which meant it grew down into the vagina so I think that this is also a concern for them although at the time of hysterectomy margins were clear. I've had two very long chats with my brother and best friend tonight and I'm pretty much resigned to go ahead.

I just have had enough! 


Hi Julia,

Life without pleasurable penetrative sex is not the end of the world, and it is LIFE. I have had a fistula between vagina and rectum before and it can be fixed with a stitch, no need for a stoma bag or any of that crap (phnaar).

Obviously it's hard for me to say what I'd do in your shoes because I don't know everything there is to know about being you. But this has been following you around doggedly for a while now and if it were me I'd throw everything at it.

With love

Hi 365,

Only just read your post and probably don't have much extra to add but wanted to wish you well in whatever you decide.

The consultant thought that the chances of getting a fistula was about 1% which seems pretty low to me. You also said that they were leading you in the direction of having surgery because if it does become cancer then treatment of the vagina is not good. I think we would all balk at the idea of a colostomy bag but there are plenty of people out there who do live with it. I know from previous postings that you have a 12 year old son who I am sure would prefer to have you with a bag, if it comes to that, rather than not have you around at all. These are the thoughts that have been going through my head. Do hope you can come to a decision that feels right for you, and you know we are are all here supporting you in whatever way we can.


Been thinking about you all day sweets <3


Hey 365,

I just wanted to say that all the options suck, and I really feel for you. Your fighting spirit is a real inspiration to loads, if not all of us. Good luck with your decision, totally confident that you will make the right one for you and your circumstances x x x

Thank you lovely ladies. 

I'm doing it! In for 7.30am tomorrow. Xx

Brave woman! I think it is the lesser of two evils. I will be thinking of you tomorrow morning and sending love and positive vibes your way.
meanwhile  .  .  .



Hope you feel just a tad better for having made the decision. Will be with you all the way tomorrow. Wishing you all the very very best. Stay strong, as you have been all the way along, and I hope it is a walk in the never know!

love and big hugs xxx

Just wanted to send you a big hug and lots of positive thoughts ahead of tomorrow. You definitely are an inspiration and always know the right things to say. You've made the decision that's right for you and as Tivoli says are one brave woman. Will be thinking of you tomorrow. Good luck xxx

Hi 365


i just want to wish you a good luck tomorrow and hope that this op will be really successful

All done. And feeling remarkably good. Sore but nowhere near as bad as I thought. Shuffled down to real coffee machine this morning so definitely out of bed! Catheter out late last night, but haven't wee'd yet. Hope it will work! Nice room mates, nice nurses, all good! 

Lovely to hear your positivity back 365 days. Glad things seem to be moving in the right direction. Everything crossed for a successful outcome.

lots of love



Rooting for you!

Can't believe you have posted so soon. Great to hear it all went well and that it was better than you expected. Good luck over the next week or so and take it easy.