4 months ago I had pelvic exenteration & just wondered if there are many others like me about? Would be nice to hear how others are coping! Love Michelle, Suffolk xx
Hi Michelle and a very warm welcome to the online community
I have to confess that I didn't know what a pelvic exenteration was so I had to look it up on this website before I could reply. This is the information the Macmillan provides on pelvic exenteration in women.
I've searched the online groups and have found it mentioned quite a bit in the ileostomy, colostomy and stoma group so am tagging my friend Bodach into my reply to you as he looks after that group. If you'd like to join the group just click on the link I've created and then choose 'Join This Group' on the page that opens. You could then start a post by clicking on 'Start A Discussion' or look for previous threads about pelvic exenteration using the search bar in that group.
When you have a minute could I ask you to complete your profile as it really helps others when answering, or looking for other people with a similar diagnosis. It also means that you don't have to keep repeating yourself . To do this just click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Macmillan recommend that you don't put too much personal information in your posts which could lead to you being identified outside the community. As anyone can view the posts, and there could be unscrupulous people lurking, I'd recommend that you don't include information like your age and where you live in your posts to keep you safe.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
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Welcome to the Mac family and I see that you have already started to reach out to other members who've undergone the same procedure as yourself.
As latchbrook, Anne, has mentioned I look after the Ileostomy, colostomy and stoma support group and this maybe one of the groups that you should consider joining and Anne has given you instructions on how to join the group however there maybe other groups that you could join and talk to the ladies.
Completing your profile telling us how your journey brought you us is very helpful to other members when they start to respond to you in the future it also saves you repeating yourself time and again
Can I ask which type of pelvic exenteration you had performed ANTERIOR, POSTERIOR or TOTAL.
All of the procedures will no doubt have left you with 1 or 2 stomas or just a continent utinary diversion and the Ileostomy, colostomy and stoma support group can help you with your stoma management.
However with removal of your other organs the ladies of the (may include gentlemen) Ovarian cancer, Vagina cancer, Womb (uterus) cancer, Cervical cancer Groups will be able to talk you how they coped with losing these organs whilst the ladies and gentlemen of the Bladder cancer can talk to you about their experiences. No matter which group you speak to you you will find one thing in common all of the members are very friendly.
I can speak to you about any aspect of stoma management but for obvious reasons I have no practical experience of female pelvic exenteration but I am sure we have some members on here who will be willing to talk about their experiences we just have to introduce you to them and if you would like to come back to us either Anne ( latchbrook ) or myself Ian ( Bodach ) will only pleased to introduce you to the groups.
Please do keep coming back.
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