Just found the PRDA!

[FierceFriend]

I live in the USA and we have nothing like PRDA here! After surgery, chemo, pelvic radiation and brachytherapy for an aggressive endometrial cancer, I thought things were ok.

But bowel issues have been challenging as well as pelvic insufficiency fractures. I struggle to achieve balance and quality of life. Each doctor that I see offers a suggestion, but I get the feeling that I’m mostly on my own, as they’ve done their jobs and I’m still alive. (I am 15 months post treatment.) I will be following the posts here for information and support.

[Jimbo65]

I hope you're having regular checks with your cancer nures. Do not put up with side effects of treatment. Keep asking and pushing for solutions. Some things can't be fix but they can be helped. Use the hormonal cream regularly and the dilators. It's important for your bowels and bladder to maintain the area as much as possible. It's your body, all be it a different one now, so look after it both physically and mentally. Don't be fobbed off. Wishing you good health as you go forward with new challenges. Xx

[FierceFriend in reply to Jimbo65]

Thank you Jimbo. I’ve been reading many previous posts and see that there are so many of us struggling with side effects. It is not a topic I share with most people so the information and support here will be helpful.

[Silver1-lady]

this is an amazing group helped me a lot we do have monthly online chats and there are people who join from Canada and the US, welcome there is lots of support available.

[Blue_Hawaii]

Hello FierceFriend , I’m pleased you have found PRDA

You are not alone , this is a lovely, warm and friendly group of people

We share our experiences, of the journey we are on and still going, for the medical team to listen to us

Hopefully we meet up on the group meeting on Zoom in the new year

Sending 🤗

[JDKPA]

I am in the same position as you and find it shocking that here in the U.S. there is never any mention of PRD nor anyone who specializes. I read with astonishment about clinics and specialists in the UK! I guess that since there is no definitive treatment that we are just forgotten. The damage is done and cannot be undone, but I still think we need to be heard!

[FierceFriend in reply to JDKPA]

We DO need to be heard! I have received various suggestions from different providers, but I am left to sort it out for myself. Being a patient/survivor in the US involves a lot of homework! Our oncologists may extend our lives, but quality of life should not be taken with a shrug of the shoulder. (It’s scary to RSVP for a wedding or to plan a get-away with thoughts of bathrooming concerns.) Thank goodness for the good people here who share and support each other.