It's been a while... update on me and bladder issues

Hi girls

It has been a while since I have posted. I have been checking in here and there, reading everyone's posts (in this section). I have been freaking out for the last couple of months, because of my ongoing bladder problems. Plus I have had some groin pain on and off.

I saw my oncologist two months ago and told them of my consistent bleeding with urinating and other urine problems - I was booked in for an EUA and Cystoscopy, and then the day before the procedure, it was cancelled due to an administrative problem (apparently I was never put on the surgical list for that day?). So I have waited almost 2 months to have this procedure which I had today. My oncologist did not seem too concerned that my procedure was postponed. Sometimes I wonder if anything phases them or if they just have a great poker face. 

Anyway, I finally had the EUA and Cystoscopy today. I was freaking out because I saw on the admission paper that it said to "biopsy" and that just sent me in to panic mode, had a bit of a melt down but the nurses were so helpful and I was able to calm down before theatre. 

My oncologist came and spoke to me before theatre and she said that she thinks it will be a case of radiation cystitis, she was really comforting so I felt a bit calmer before. As soon as I woke up, my oncologist said "there's no sign of cancer anywhere". Omg I was so relieved! She said that I do have a case of radiation cystitis and some damage to the wall of bladder. She said a few other things, but I was still coming round so cannot even remember what she said. But the main part was that she didn't find any cancer. I definitely caught that part. 

I am going to be having a follow up appointment soon (not sure when) to go over more details of the procedure and possible treatments, but that's not urgent. 

I am feeling really grateful right now. I feel very blessed to have come through this with no sign of reoccurence. I am not out of the woods yet (17 months since treatment) but I feel if I can get through the rest of this year's appointments (3 to go), I will be able to me more relaxed about the fear of reoccurence.

I still have daily issues with my bladder - bleeding on/off, trouble urinating, leaking urine, incredible pain when urinating, feeling that the bladder is not emptying, frequent urination, constant feeling of pressure in bladder - but I can deal with this, as long as C isn't back.

I hope everyone is going as well as they can be given the circumstances. Sending all my love and light to you, escpecially our girls fighting the 2nd (or 3rd) battle. 


Lots of love

Rosie xx



Brilliant news Rosie. Thanks for updating us and I hope your symptoms might settle a bit in due course. All the best.

Such good news  I still have  problems with  my bladder it kinds nice  knowing I'm not the only  one

Hi Rosie, 


Glad you finally had the eua and cystoscopy and that there is no sign of the cancer. Must be a huge relief after such a long wait. Hopefully, they can give You something now to settle the ongoing cystitis, bleeding and bladder damage. Be absolutely great if you could be more comfortable every day. I was very happy to see your post as I was wondering how you were going. I Hope you are celebrating the good news part. Much love xx

Hello Rosie Lovely to hear no sign of cancer recurrence. It is looking very good and I am so pleased for you. I hope you are enjoying your little girl and can look at her and feel relaxed about the future. Jayne

Hello @starlight22 ,

I know this is an old post but I’m experiencing pain at the end when I urinate, like my bladder is cramping. I’m 20 months post treatment and I’m worried. Can I ask what did help with your situation? Did it get better? Thank you in advance. Much love. Xx