radiation cystitis - blood in urine for 9 days straight

I’ve had blood in my urine constantly for the last 9 days and am freaking out.  Sometimes it’s pinkish and lighter, sometimes heavy, bright red, like pure blood, with large dark clots (sorry!). 

Anyone else have Radiation Cystitis and had a long, heavy bleed for over a week?  I’m worried and it shows no sign of stopping.

I had a diagnosis of radiation cystitis 6 years ago (cystoscopy etc).  At first it was just the occasional mild bleed  – usually it was dehydration, red wine, or something and it would resolve in 24 hours or so if I drank gallons of water.

Then by 2012 the bleeds were increasing in frequency, often for no reason, and I was lucky enough to get Hyperbaric Oxygen Therapy daily for 2 months in Autumn of 2012.  This was like a MIRACLE.  Only one teeny tiny bleed for the whole of the first year.  bleeds increased a little since then but still a vast improvement on prior to HBOT – happen so seldom, and so mildly, that I barely notice or log them in my mind.

I’d been super fine then whammo – massive prolonged haemorrhage.  This occurred immediately after I’d had a bad UTI and been given a double strength dose of antibiotics (macrobid/nitrofurantoin)  The antibiotics gave me thrush and I started bleeding almost as soon as antibs were finished.  At first bleeding intermittently, then constantly for last 9 days.  Could the double anti-strength antibiotics have irritated the bladder and started the bleeding?

Has anyone else had bleeding this heavy and for over 9 days?

Is it burst blood vessel or ulcer or something?

How was it resolved?

Is it just something I’ll have to live with i.e. get on with life and don’t worry?

Obviously I’m freaking out that it is bladder or kidney cancer, though I’ve been feeling super well and this has come out of the blue.   Aaagh.  Just want life to be normal again.

I had an urgent appointment with my consultant on Wed.  Urine/blood tests came back today normal and negative for infection.  I am waiting for MRI appointment in next 2 weeks. Then back to hospital for MRI  results in 3 weeks.

My history - I had chemoradiation for 1B1 CC back in 2004 and have been happily cancer free ever since.   

Can’t find any patient to patient forums for Radiation cystitis on net – be great if anyone has had this level of bleeding, got it resolved and went back to normal.  And if anyone wants to know about HBOT ask me.

 

Amanda 

Sorry I can't help Amanda but I didn't want to read and run. The best I can do for you is a hug.

(((((HUGS)))))

Be lucky :-)
Tivoli

Thanks Tivoli.  Guess I'm out on a limb with this one.  Thanks for replying though.  Waiting for MRI in next couple of weeks.  Fingers crossed....

Amanda

Hi I know its a bit late but I have not been on forum for a while. I had this was hospitalised for 8 days still kept bleeding like mad , had colposcopy, only found a small bleed nothing other abnormal. I t stopped I came out of hospital and was back in within 3 days, they just flushed me through drank loads of water and sent me home after 3 days. I have sincce had it twice, and cleared it myself by drinking absolutely loads and loads of water. The only time I will go back now is if i get blocked in the urethra, and then I will have to. I am sure it is caused by slight infections or cystitis, so i try and drink plenty all the time now, and have been clear for 9 months. I hope your problem has resolved itself, sorry I was not around to help earlier

I've been diagnosed with radiation cystitis also and blood in urine also with loads of blood clots and this been going on for 26 days now, how long did it last for any of you that are experiencing this?