Hello all. I've had Crohns disease for 30 years and have recently been diagnosed with rectal cancer. Mucinous adenocarcinoma with signet ring cell. I've been told us confined to my pelvic area and that I'll need a posterior pelvic exenteration. Removal of rectum, anus, hysterectomy and vaginectomy. I'm very scared. I've been on bowel/rectal cancer groups but have only found one person who's had this done. I'm due to have a temporary ileostomy next Tuesday, then radiotherapy and chemotherapy after that the big operation. I'm at a good hospital who specialise in this kind of operation. They are taking tissue from my buttocks to fill in the void that will be left with the help of a plastic surgeon. Not too concerned about the ileostomy as thsts always been a possibility with Crohns but very upset about the vaginectomy and having all this done with no guarantee it won't return. Any advice from people who've been there would be very gratefully received please. X
Hi Ricecake I've not been there but it lurks in the back of my mind. There are many women on here that have had it done. If you do a search you will find them. I recall a recent post where one woman was 10 years on from pelvic exenteration and she was so grateful she got to see her children grow up. Jayne
I don't know if it's exactly the same op, but CD84 -Cara - and Jue both posted about pelvic exenteration. Cara's was last summer and Jue's was 10 years ago. I saw a posting from Cara recently so I think she still reads the forum. If these guys don't jump in you could try sending them a personal message.
There's also been some recent talk about vaginectomy - 365 days, sticks in my mind, because she was always carting her urine samples around in marmalade jars - although there were others. She's often on here, roaming around, so she may see your post too.
Hope all goes well with your op next week.
love t xx
Hi Ricecake :-)
I'm so very sorry to read this. I have not been there either but can fully empathise with the emotions involved. My surgery was 'only' a radical hysterectomy but after it had been done I was told that 'most' of my vagina had been taken and yes, I was devastated. The rest of it has since been withered by radiotherapy and so my sex life is over much younger than it ought to have been. I can't offer you any advice except that some while after all my treatment was over I went for counselling which I found extremely helpful.
Be lucky :-)
Thank you Jayneeb. To hear there are others and that they've survived is really heartening xx
Thanks for your reply ThereraF I'll look out did the names! Xx
Hi Tivoli I'm so sorry this has happened to you. My husband has been great about the news but I'm angry for him, for myself and that this is all so brutal and invasive. A month ago I'd never even heard of a vaginectomy now I'm practically an expert in the procedure. I hope you've adjusted and been able to find some peace in your heart and recovery, thank you for replying xx
I had a total exenteration in July. Please feel free to message me with any questions.
I know it's a daunting prospect and a massive operation with no guarantee that it won't come back. I chose to focus on the fact there was no alternative and got through it. I won't pretend I don't get dark thoughts about everything but I try so hard to enjoy every day as it's out of my hands.
Love Cara xxxx