Radiation Cystitis round 2

[John438]

I just got out of the hospital last week after a 2nd ER visit in a year for blood clots blocking my urethra. On top of that my lupus had kicked in and we found out my immune system was killing my blood count lowering the red blood cells and destroying the immature platelets which help clotting. Found out later I almost didn’t make it out of the ICU, I almost bled out. I left the hospital 8 days later after many transfusions of platelets and whole blood. And things are looking good, blood counts are up and I can urinate again. Now my urologist wants me to have a third round of hyperbaric chamber treatments to insure this doesn’t happen again. Radiation, the gift that keeps on giving.

[Munchkin2840]

Hi John! I can relate to your situation.I have had several trips, in the past, to the ER due to blood clots caused by Radiation Treatment.

Finally, after 40 trips to the Hyperbaric Chamber, the bleeding and clots stopped.

It has been almost 2 years now and I am doing well.

I hope you continue your Hyperbaric Treatment and it works for you.

Good Luck to you!

[fredyworks]

Hi John I had similar situation after 20 sessions of mitt to prostate and then 1 year latter Turp to open up prostatic ureatha It didn’t heal and caused dystrophic calcification to area of Turp and bladder neck so they did 20 sessions of hyperbaric

Oxygen therapy then cleaned out calcification and then 20 more sessions of

Hyperbaric afterwards no more bleeding

and inflammation in prostate is gone!

Ask your doctor if you get at least 20!

[Hidden in reply to fredyworks]

I’ve already had two hyperbaric chamber sessions. First was 2016, 40 sessions for radiation proctitis. Second was last summer another 40 sessions for the cystitis. I’m not looking forward to the third one and another summer shot to hell.

[Blueslover]

Just finished 40 hyperbaric sessions for haemorrhagic cystitis after radiation in 2011. Haven't seen any blood for 2 weeks - fingers crossed. Not that I don't have any other urinary symptoms, but that's another story. The urology dept at Duke wants to repeat an assessment after long term bladder relaxing drugs.

[John438 in reply to Blueslover]

Now they want me to start a third series of treatments maybe as early as next week. I’ve had enough but I have to keep trying.

[John438]

I ended up having 159 hyperbaric chamber treatments with no results. And three weeks later I was back in the ER again with blood clots blocking my urethra. Very frustrating.

[Aljr2004]

John, did your Uro recommend removal of the bladder or using one of the acid treatments?

[Aljr2004]

Thanks for sharing John438. I am here searching for information that might help guide my path forward. My bladder began bleeding about 5 years after Salvage Radiation, but it amounted to nothing - few times a year here and there. Things got bad in 2021 (9 year point) and I tried HBOT. Never stopped bleeding totally, but it slowed things down considerably for a short time. Then the rebound - June/July were unmerciful. Just experienced total bladder shutdown (10 year point) landing me with an oversize cleanout catheter for a few days. I avoided transfusion during the biggest periods in June, but had a few days of anemia that had my primary wanting to pull the trigger on transfusion. LRHC is frustrating because we have no way to predict the good versus bad days, or how long the heavy bleeding periods will last. Prior to the shutdown, I had not bled for two weeks and was hoping the worse was behind me, but instead the worse was in front of me and I didn't see it coming.