Vaginectomy

hi flamingo275 I haven't had this procedure myself, but didn't want to leave your post without a reply. Hopefully someone who has had this procedure will be along soon, but just wanted to wish you all the best for your appointment.

Hi, I had this operation nearly 6 weeks ago. Plus external reconstruction. Was a big decision deciding if I should have the reconstruction or just be sewn up. But not even being 50 yet I wanted to still have the choice to possibly be able to have  a sex life with my husband. 

I'm assuming you will already had your appointment but I'm more than happy to support with any questions. Its a huge operation but you will get through it. I came on here because I feel like i need to connect with somebody else who has had this done. I am now feeling the effects of how huge this is for me. I'm sending you a big hug.

Hi thanks for replying, I'm dreading this op and really dont know what to expect recover wise. I'm not having the reconstruction, which I'm not sure how I feel about as the thought of not having proper sex life is daunting. How were you after the operation and has it taken long to recover? It'll be good to chat with someone who's been through the same operation, love Belinda xxx

Hi Flamingo275,  its such a difficult decision to make whether to have the reconstruction or not. I will be 50 this year and been with my husband since I was 19  he is wholly supportive of whatever decision I made but I felt I needed to still have the option there to have a sex life again. I am 6 weeks after surgery. I spent 2 days in intensive care, 5 days bed rest only  with my left leg raised. They took the muscle from the inner left thigh for the reconstruction. I was in hospital for 10 days total. Very hard this time not having any visitors. 

I had external reconstruction  as well as internal as one of the tumours was near entrance to my vagina pushing through from where my large bowel would have been. I had my large bowel and an ileostomy performed when I was 10 due to crohns. Rectal stump removed in my 20's. My cancer was colon cancer even though I don't have it. They think tiny cells left over grew into the first very large tumour in 2019 which was removed same way and tissue and fat taken from my buttock to plug the gap. They didn't touch the vagina then but I think if they had I wouldn't have been going through this now. As the 2 tumours just removed grew less than a year after the first in same area. I had 5 weeks chemoradiotherapy and the buggers just grew!!

Sorry this is so long... when I first looked underneath i just cried. You also get a lot of body fluid leaking out of the new vagina  which is less now but I've got some sort of discharge too. The worst pain was having the drain removed, the rest has just been sore and uncomfortable, I was very surprised that I wasn't in more pain. I am walking the dog albeit slower and took my first short drive today although it was uncomfortable. I've been pottering about at home pretty much since I came home and have felt ok. 

I'm starting to worry about anything to do with sex again although I know its a long way off and my specialist nurse is going to speak to Macmillan at the hospital for counselling  although I think this is something my husband needs too. I'm not sure when, how I have to start using dilaters if the vagina starts to narrow. This was one of the reasons I thought of not having the reconstruction. 

Its a huge op and something so intimate. I'm so sorry your going to go through this too. But I'm so pleased I can be there to support you through it. 

If there's a way we can actually talk I'm happy to do so??

Big hugs to you

Sarah 

Hi Sarah it sounds like you've been through a lot! My cancer story is I had a tumour removed from my vulva 7yrs ago and fortunately managed to be seen regularly by the gynae consultant, as I still was experiencing pain. They found a recurrence in my lung this year and removed that, but unfortunately it has reoccured in the pelvic muscle, because its so rare they've had lots of discussion about what to do. The surgery they first were going to do involved the bowel and bladder creating colostomy and urostomy which really freaked me out, now they're hoping for it not to be so extensive. It would be great to have someone to chat to, I'm on holiday at the moment but could private message you my email or mobile number. Its a massive thing to get my head round especially when it changes your life so dramatically, you sound very positive which really helps!

Belinda xx

Hi Belinda  I hope your having a lovely relaxing holiday. You sound like you've been on such a roller coaster ride too. Its not easy when your cancer is unusual.

Everyone around me says I'm always so positive but inside I'm screaming to be honest. 

Message me when your ready to talk with your number. I look forward to our chats. 

Sarah X

Hi Sarah I know what you mean  about what people say and how you actually feel, my friends keep telling me how brave I am, and I just think I haven't got a choice.  At times I just want to curl up in  a ball and wish it would all go away. Its reassuring to know other people feel the same. 

Looking forward to chatting to you 

Belinda xx

Yes my friends say the same and then I feel annoyed because your right we have no choice and just have to get on with it! 

X

I’ve got an incurable lump (sarcoma)in my vagina after having been in remission from ovarian cancer 8 years ago when I had a total hysterectomy. I say incurable as removing it means removing my bowel and bladder and it is likely to return. I’ve had 13 sessions of radiotherapy which I found very hard going with the soreness and now 10 weeks later I still have a discharge which requires wearing pads 24/7. I saw a post somewhere of someone saying they had a discharge which got her down and I couldn’t log on to reply to her, now I can’t find it anywhere. I don’t get a scan until October. I’ve stupidly booked a holiday (as I thought safer to go now rather than next year as I don’t know how quickly it will return) but because of the discharge I’m thinking of cancelling and of course losing the payment. Until I have the results of the scan I can’t relax fully especially when my discharge is sometimes bloody, though specialist nurse said I’m still recovering.

Thanks for listening. X

Hi cocoon 50,

You've had a pretty rough time and I'm sending you a huge hug. It may be one of my earlier posts that you saw. The discharge i still have is from where they took away my vagina and reconstructed it. I've been told it may not go for months and is part of the healing process. 

I also had weeping from the vagina area after my radiotherapy which did eventually stop. But again wore pads for a period of time.

It sounds like you really need that holiday and if your consultant has said you can go and you feel that you can then go, a change of scene will do you good. Just be kind to yourself and make sure to take things easy. 

Let me know how you get on 

X