Vaginectomy

Please do excuse the title of this post. It seems to be a word that isn’t thrown about a great deal. Even spell check wants to change it to vasectomy.  This is probably because it’s rare and grim and most people don’t talk about theirs! My hope by tagging this post is that someone in the future going through the same can find some useful info, or at least a shared experience.

It’s a medical procedure that involves removing the vagina. Search it up on google and you will find FTM (Female to Male) transgender forums discussing the issue. Some factual stuff. But very little in the way of peoples experiences.

I will be having a partial vaginectomy. About an inch and a half will be removed, bearing in mind a fair good whack has already been taken away I am rather concerned about this. The experts who have studied my vagina in very close detail tell me I should have no issues with sex in the future as I still have ‘good capacity’. I rather like sex so this IS kind of important.

The operation takes about 2 hours and it’s expected that I will be in hospital for 2 to 3 days. I was told today that if I had the op in 2 weeks I ‘should’ be recovered by Christmas.

I asked my Mac nurse today if there was anyway I could pay to not be in a room with dying old ladies. There isn’t but she is going to try her best.

No date set yet, but definitely before Christmas and possibly in 2 weeks time. Hopefully when I go to discuss the delights of having more of my vagina removed next Wednesday they will be able to tell me a date.

The very hardest part of all of this is making the decision to have it or not.  When I spoke to my consultant on Wednesday he stated that the MDT (Multi Disciplinary Team) had discussed my….er…..vagina, and were highly recommending this as a course of treatment. But ultimately…..the choice is mine. I’m the sane adult that has to sign the consent form. That’s a huge responsibility.

The thing is this. There are no hard facts out there on percentages of how much VAIN3 turns to cancer, and no one can tell me if mine will turn to cancer. It’s all ifs, buts and maybes. If it was my ear lobe that was precancerous I would have no qualms about having it removed to prevent cancer forming. But its not my ear its my vagina. There still remains a chance that when all that is removed is tested cancer could be found.It could be lurking in there somewhere. Likewise there remains a chance my VAIN may not change into cancer for years if ever.  I think my mind is pretty much made up to go ahead and have it done but a few more discussions need to take place next week.

It’s all a bit bollocks.

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Results.

Another tough week waiting for results. Never gets easier.

No malignancy found but multi focal VAIN3.

Speaking to a friend earlier I came up with an analogy which I will share here to try and explain what that means.

My vaginal wall is the roof…bear with me…..

Water is the precancerous cells.

The roof has 3 layers.

When the water finally invades the 3 layers it becomes a problem, obviously, by flooding your house. (Cancer)

VAIN 1 is the water penetrating 1 layer of roof, Vain 2, 2 layers ……well you get the idea.

Last time I had VAIN3 they stuck the equivalent of a tarpulin up. A relatively quick and easy fix which we hoped would solve the problem. It didn’t.

This time I’m having all the old tiles ripped off and fixed back up again.

This is called a partial vaginectomy. Its pretty grim, but not as grim as a total vaginectomy and not I’m not hugely looking forward to it funnily enough. Its a fairly large op. 2 hours in theatre and 2 to 3 days in hospital. God knows how long I’ll be off the bike.

But, but, but, the hideous, gut wrenching, sweat inducing, WAITING for results is over.

Pah.

So Wednesday I had my 3 month check up.

This time last year I was in the throes of pre ops and appointments for my last surgery that was on 27th October 2014. A year later it’s all a bit de ja vu.

They were running really late yesterday. Really late. It’s not a moan because I know its absolutely not intentional but kicking around in a waiting room for an hour and a bit just adds to the ‘Get me out of here’ feeling. Especially when you know you’re waiting for is bits to be snipped out of your vagina.

Usual drill, up on the chair for a good old look see. He is going to start off with a vault smear. Therefore he can’t lube me up, and apologises it might all be a bit…..tight. Do you feel a little weird reading this? Imagine what it’s like to be the one having this conversation. It’s awkward to say the least. I have to go into joke mode to get through it. If I didn’t I would probably sob from start to finish. I think if I started sobbing I wouldn’t stop.

So I cracked some jokes, whilst having aneasthetic injections in my vag and bits of flesh snipped out of it and silver nitrate shoved up there to stop the bleeding. Get dressed with a lovely NHS pad (think brick) and go and sit down to hear the news. It still remains a very surreal experience.

After that I’m expected to have a serious conversation about treatment. A conversation about having another chunk of my vagina chopped off. I don’t want to chat thanks. I want to go home.

The next day I spoke to Jane. She read me a letter that my consultant had dictated to my GP. He found the colposcopy ‘worrying’ and the biopsies are to ‘rule out micro invasive carcinoma’.

I’m positive that if it is cancer it will be tiny as I only had a CT scan a few months ago and I’m hoping it would of been picked up on that. It’s all rather academic anyway because treatment for VAIN3 and micro invasive cancer would probably be the same.

I’m fed up. Fed up with check ups and fed up with rarely getting a ‘You’re all clear see you in 3 months’

I said to Jane  ‘I’m going to be a lifer aren’t I?’ she replied ‘We are certainly going to get to know each other very well’ She also asked if I’d looked on Cancer Research website…………………………….I tried not to reply with ‘Golly no, I’ve only been on this cancer journey for nearly 2 years, I haven’t got round to that yet’

Hopefully ringing me with results next Wednesday, and then in following Wednesday to discuss treatment.

Pah.

Run Away!!

Quick update.

Lesions that were there last time have got worse. No surprise there really.

3 Biopsies taken (with local anesthetic) and vault smear.  Back in 2 weeks for results but have asked to be phoned with them if they get them sooner.

Asked ‘Could it be cancer?’ Answer ‘I’m not sure’ Fair enough. Biopsy results will tell us.

So ….. just have to wait and see.

Did my usual trick of not really listening and getting out as quickly as possible after that news.  There was some discussion of more surgery (partial vaginectomy) but not sure if that was if it turns out to be cancer or even if it isn’t.

Think I’ll ring Jane tomorrow, have a proper chat, and update.

300k

Took a little while but got to the 300km mark with a 26.9km ride today to lovely Lacock , my longest ride so far. You may recognise it from the many TV shows that are filmed there. This was taken outside the bakery…………………..cough…..

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Today’s date has been on my mind for quite a while. Months ago I got my check up appointment letter from the hospital for today. Unusual that it came so early, they usually arrive a couple of weeks before the appointment. But on Friday I had a call saying that my consultant was away and I could either come in and see someone different or wait until the 21st and see him.

Not particularly wanting to air my nethers to even more medical people I plumped for the 21st. Its highly unlikely I’ll clock up another 100km before then so I’m sure the next post will be the low down from the follow up.

Only 2 weeks to wait…….