pelvic exenteration

• By mrsfletch1978
• Reply 3686268
• January 8, 2013 at 10:47 am
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I had a pelvic exenteration surgery 2 months ago. I'm doing pretty well now and I am going to try and go back to work pt next week. It is a huge life changing surgery but it can also be a life saving surgery. I'm happy to answer any questions you may have, but yes she will make it through this and can still have a good and happy life.

• By maggiegal
• Reply 3687301 · In reply to 3686268 by mrsfletch1978
• January 8, 2013 at 4:17 pm
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You don't know how much your reply has helped. Why did you need one?

• By jaded13
• Reply 3687916
• January 8, 2013 at 8:20 pm
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Prayers for your daughter and to you Mrs. Fletch! The strength and fight of the women on here is amazing! Hugs and much love to you all and know we are all pulling for you guys:)

• By YourKiddingRight
• Reply 3691945
• January 10, 2013 at 2:46 am
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If you change your post to members not public you may get more responses, many do not want their posts to be public.

• By maggiegal
• Reply 3692327 · In reply to 3691945 by YourKiddingRight
• January 10, 2013 at 8:24 am
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I'm sorry, I didn't know and have changed it to members only. Thankyou

• By OntarioGal
• Reply 3696356
• January 11, 2013 at 12:51 pm
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Hello everyone,

I had a pelvic exentoration about 2 years ago. I needed it because of a very rare tumor I had on my tailbone called a myopappillary ependymoma or MPE for short. I am a 39 year old mom with two beautiful girls aged 6 and 21/2 years. I knew I needed ths operation if I wanted to live and the pain that this tumor was giving me was unbearable and I welcomed this operation to get rid of the pain. It has been a very long road but I want to let anyone faced with this operation know that you will get through it and you can live a pretty normal life afterwards. I was in hospital for 4 weeks in total and then had a hospital bed in my livingroom for about 5 or so months. I had to lie on my right side for most of my recovery so that my wound could heal. I have 2 bags that I use for my waste disposal.....this was something that I was really worried about before surgery but they have become a way of life for me now. I can wear normal clothing, go on trips, swim....pretty much anything. The only problem I have is chronic pain in my legs. I am on pain medication to help with that.
If anyone has any questions or just wants to chat, please feel free to message me.

• By marlinblue72
• Reply 3696503
• January 11, 2013 at 1:36 pm
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I had this surgery nearly four months ago now. (sept 14, 2012). I was stage 3cc and got over 18 months of remission. Then a recurrence vaginally. PE was my only option.

The surgery went well and the first few weeks of recovery went extremely well. I then had some complications like bladder infections, abscess, and a fistula. I am still recovering. Dealing with some hip/leg pain. Not sure what is causing it yet.

Otherwise I feel pretty normal. I have a neo-bladder (Indiana pouch) through which I cath through a stoma in my lower abdomen. It's a life change but it's already become so simple and easy to do. I have a temporary colostomy bag. I am used to it now too. They are easy to change, clean, etc. And I wear jeans, slacks, and pretty much any kind of shirt. My colostomy will probably be reversed in a few more months.

Life does go on after a pelvic exenteration. The recovery period takes quite a while and she will need to be patient with that. But this surgery can save lives! It is very worth while!!!!

• By maggiegal
• Reply 3711338 · In reply to 3696356 by OntarioGal
• January 16, 2013 at 2:16 pm
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I told my daughter about you. She is 37 and has a daughter 15 and a son 10. Yesterday she spent the day in bed because of being depressed. I know this is a big thing for you girls being so young and she is trying hard to make sense of all of this, and is wondering why this has happened to her. What state do you live in? We are in Pennsylvania.

• By Jodi_ayn
• Reply 3720208
• January 19, 2013 at 12:17 pm
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I'm almost 5 years post PE! Yippee! Had a rough time and long recovery, but so thankful now. I'm now 42 with 3 kiddos and so thankful to be here with them. My parents and inlaws were extremely supportive, helping with the kids and nursing me back to health. Hang in there. It's a journey! And I think your daughter is going to go through several stages of grief and loss, but eventually find her source of strength and start fighting back. She's lucky to have you and to get another chance!