Scared

Hi Suewoo,I had my bladder removed in 2019 and have a stoma.I’m happy to help if I can.It’s natural to be scared but I don’t think you will find a stoma as bad as it sounds.Jane

Thank you so much for replying. It’s just the fear of the unknown I’m pretty active at the mo and worried it’s going to change my life style. I coped well with not having any boobs but this feels much bigger thing. 

It is a big thing but you should be able to have an active lifestyle once you have recovered.People are able to travel,play sport etc following cystectomy.If you are able try to get as fit as possible before the surgery as this will help.Recovery does take time usually a few months.I felt much better after 3 months and by 8 months I was able to return to caring full time for my disabled mother.It is amazing just how quickly you can adapt to having a stoma.You will have stoma nurses to show you what to do and to guide you.I think you just have to be prepared for a few ups and downs in a slowish recovery but once you have recovered it will be ok.

Hi Suewoo 

Gosh-you’ve already had a lot to deal with!

I’ve had my bladder and vagina removed in total pelvic exenteration surgery 3 years ago for recurrent cervical cancer so I have good understanding of your feelings and what surgery and recovery will involve. There are quite a number of members living with stomas in the community but it’s rare to find anyone who has also had their vagina removed. 

You can definitely resume an active life post recovery, but recovery does take time. Happy to help with any questions if I can based on my own experience. What I would say, for me, the thought of it was worse than the reality.

Sarah xx

Thank you. That’s reassuring. It’s good to chat with someone whose been through it. 

Thank you. That’s reassuring. It feels like the end of life as I know it ! 

Thanks Sara. I’m on an endometrial cancer group and not a single lady has had this form

of surgery. 

I can see you have been through so much already.I’m sure you would get a warm welcome and support in the bladder cancer group with Sarah & I.There are several of us who have had bladder removal.Love Jane 

Hi Suewoo 

I do know quite a number of ladies who have had this surgery for various different cancers in other groups, but I don’t know anyone personally who has had it for endometrial cancer. Ultimately, it’s the experience of the surgery itself that you might find helpful to know about, if you have any specific questions. It’s fairly rare surgery, as it is normally only offered for recurrent cancer where there is no spread beyond the pelvis

The bladder group in the community here has a number of ladies like myself and Jane who have had bladder removal, and is a good source of support for that aspect of the surgery.

Sarah xx

Thank you I am Currently skiing in Italy with the whole family so very keen to stay active