Hello everyone
So long story short, I’m 54 and 8 years ago, at just 46, I had a small G1 pTa tumour removed from my bladder.
Leading up to discovering I had BC, I’d had a number of UTI’s and some haematuria.
it was a shock at the time. I had regular cystoscopies for a few years and no reoccurrences.
But my bladder issues have continued, lots of pelvic pain, pressure, dragging sensation, UTI like symptoms, burning, nocturnal frequency etc.
These symptoms come and go.
Following another bout of symptoms and more haematuria (even though no reason has ever been found for this to continue post BC), I had another cystoscopy 6 weeks ago. Bladder looked fine except it was rather red and inflamed. Specialist nurse suggested a course of Hyacyst bladder washes to try to calm things down. Today I had the last of these treatments and a cystoscopy to see if things had settled down.
Unfortunately, my bladder issues worse. Lots of inflammation and some “patches”. One area looked ulcerated (my description). Like white, open sores.
The team were as surprised as me. There was a consultant and a trainee in the room. They took photos and I heard one of them say; “CIS?”. They said they’d need to do a biopsy under GA. I asked my nurse specialist what else it could be if not cancer. She shrugged and said she didn’t know but then mentioned interstitial cystitis.
The biggest concern/query for them is that if it’s IC then Its got worse whilst I’ve been having treatment/washes.
i did have a pelvic organ CT scan, blood tests and ultrasound 6 weeks ago too which were all clear- one positive at least.
I am, unfortunately, a pessimist by nature (always on my guard!) and the shock of seeing my bladder in a bit of a state plus the reaction/surprise from the team has me very worried. I’m convinced it’s CIS and the speed at which it’s grown in my bladder has me in a panic.
I’m trying to tell myself that it’s IC- I do fit the profile for this- menopausal, have IBS etc and I’ve recently been drinking hydration sachets which I’ve now read have lots of potassium in them which are known to be an irritant. I’ve also changed to a healthier diet in the last few weeks and been eating lots of tomatoes- have I irritated my bladder???? I’ve also avoided citrus because of my IBS but have I caused this change to my bladder??
So sorry, that wasn’t long story short at all!
I’m such a panicker and can I also apologise for not staying on this forum over the years to help others. Selfish of me to return when I need help and support again. But this community were there for me 8 years ago so it was the first thing I wanted to do when I drove home from hospital today x
