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Is there anyone out there that has had pelvic exteneration surgery

Posts: 2
Joined: Oct 2008

I am 6 months post after a difficult pelvic extenteration! Just checking to see if anyone else has had this surgery and how long does it take to get back to somewhat of a normal life? What complications do I still face?

baymare's picture
Posts: 5
Joined: Dec 2008

Dear Kooper,
I'm not writing to answer your question, only to echo it.
My heart goes out to you.... and I feel like a jerk at the same time because I've been buggin' out ( & still am, truth be told ) about surgery in Jan. '09. I'm not even sure yet, but they're talking about a vaginal resection and reconstruction. No one is telling me for sure yet.
I came to this site to try to find someone who's been thru the ( much ) more minor surgery that I'm facing. Then I read your post.
Like I said, I don't have any answers, just my own questions about the nuts'n'bolts of the surgery & recovery of body/mind/spirit.
I hope you're doing better every day. I hope you know that you've helped me put thing s in a little better perspective.
Holler back if you want to talk. I just found this site, but check it every day now.

Posts: 2
Joined: Jun 2007

Kooper, I'm 3 yrs out from the surgery you speak of. Yes, I have had side effects, but they may not be the same that you may have. I had past radiations and radiation soon following my surgery. I have an Indiana Pouch that does not work correctly at this time. I hope to get the nerve up and have surgery to correct it. Have a lot of scar tissue issues. It took me a good 6 months to heal up. My suture area opened up and took 3 months to heal. Yes, I fill lonely, because no one speaks about this disfiguring surgery that takes away your women hood and you are left outside looking in. We need to find a place that men & women can go and talk about the filling of not able to sexually function as we once did. If you want to talk e-mail me lesiap@yahoo.com

Posts: 3
Joined: Jul 2009

I had a pelvic exenteration July 2006, so I am 3 years out. I had many complications, was in a coma, my family told I was going to die. But I woke up and was hospitalized for 4 months. I have a urostomy, permanent colostomy (it was reversed, but because of radiation damage, the reversal didn't work). The drs. reconstructed my vagina, which was a waste of time. I have a fistula, bleeding, I always feel crappy. BUT, I work, have a healthy 15 year old daughter who gives me the push I need. Her father and I broke up because we were unable to have sex (hence the waste of time for reconstruction) and he just couldn't deal.
So, I am happy to be alive, but I feel like there is always something.
I hope your situation is better.

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