Seeking Support from Others Who've Had Pelvic Exenteration

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Help_Me_Rhonda
Dec 11, 2012 10:05 am

I was wondering if any other ladies have had to have a pelvic exenteration? I had vaginal cancer, diagnosed in late 2004. After undergoing surgery, radiation, and chemo, and a horrific doctor, I developed necrosis at the original cancer site, spreading deep within my body. I then switched doctors when I realized that something awful was happening. I took 100 hyperbaric oxygen treatments and while it did shrink the necrosis, it was not enough to remedy the situation. I was told that I only had two options at that point: Hospice or the Pelvic Exenteration surgery, leaving me disabled and with my ostomy. I had already been through too much to stop, and had two teenage daughters who needed their mom, so I opted for the surgery... Long and painful journey. I would so much love to talk to someone who knows what all of this is like!

violet-hummingbird
Dec 18, 2012 9:48 pm

Hello Rhonda, we call the operation an exenteration here in the UK, and it is as you describe, a life-saving last resort, which has saved your life but must pose such a challenge. Your special daughters must have helped you focus on getting better.

I merely had a year of temporary colostomy and reversal surgery and am back to work, but even that has changed my life, and taken me to places that I hadn't mapped out for myself! It definitely broadened my horizons, and has given me better insight into colorectal surgery and its ramifications.

Is there any way that you could use your knowledge and experiences to help other women?
I wish you a Happy Christmas and hope that the New Year brings better health and happiness.

Mandy

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Help_Me_Rhonda
Dec 28, 2012 4:55 pm
Hi Violet!

I think it is called the same here, but I've noticed it being called both. My doctor just refers to it as an event. You are correct, it has been a life-changing event. I'm thankful for it! I dislike it but am still very thankful!

I would very much like to help other women. I have added my name with the American Cancer Society, and I'm going to tell my oncologist that I would like to help others if the need arises. I know it was helpful for me to talk to someone else, although no one had the exact same surgery, so I really didn't get to speak with anyone who knew what I was up against. I certainly could offer the good, the bad, and the ugly and still put a positive spin on it!

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Thank you for responding! I wish you a very happy New Year!!
Amblessed_0402
Feb 14, 2014 6:00 am

I had one in 2012, but I went to Cancer Treatment Centers of America. I didn't have any problems. It was from cervical cancer that returned and they had to take my bladder and part of my colon. So, I ended up with a urostomy and colostomy. It was a rough road to go down, but I'm getting used to it. Not sure what the future will hold since they said it was permanent.