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2023 - 2024 Radiation Cystitis of Bladder

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Posted 9/13/2024 7:42 PM (GMT -5)
I have read most of the radiation cystitis comments and they have been very helpful. I am looking for the latest updates and suggestions from people who have had radiation cystitis of the bladder. I had radiation treatment of the prostate in 2016 and now 8 years later I am seeing the radiation cystitis of the bladder. A lot of bleeding. Other treatments have not worked. I am looking to get into a Hyperbolic Oxygen Therapy program. Age 74 living in Maryland. All comments are welcomed.
Posted 9/15/2024 7:21 AM (GMT -5)
House, we have a former member that used the chamber to relieve bladder damage. Sonny3, may he rest in peace, posted about the use and treatment. I don’t remember any of the specifics and suggest that you look at some of his posts/threads regarding his experience. He was a similar age to you when he used the chamber.
Posted 9/18/2024 10:05 AM (GMT -5)
House_Rocker,

I had a radical prostatectomy in January '21 followed by salvage radiation (39 sessions) in October - December '21. In October '23, I noticed a fair amount of blood in my urine, so my urologist performed a cystoscopy and said that I had radiation cystitis. He prescribed 30 hyperbaric oxygen treatments, which I completed in Nov. - Dec '23. The treatments resolved the problem and I have had no blood in my urine since then.
Posted 9/18/2024 10:44 AM (GMT -5)
I had bleeding with clots 4+ years after completing salvage radiation. Scary stuff and had the full workup including CT scan and cystoscopy. Diagnosed with radiation cystitis and did hyperbaric chamber in the spring/summer of 2023. 50 treatments. The condition is now vastly improved as well as cognizant of lifestyle changes. I do not lift anything too heavy (25+ lbs) and am careful not to strain during bowel movements. In the past six months I have had only a single incident of bleeding and that was light. I know that incident was caused by being pulled hard by my two dogs while they were on the leash. I know too that diet is not the cause of bleeding. Also, urologist is hesitant to do follow up cystoscopies as the procedure itself could stir up that inflammation and cause future incidents.
Posted 9/24/2024 6:07 PM (GMT -5)
I had 20 HBOT sessions summer 2022 to help resolve my radiation cystitis with heavy bleeding and clots. It worked for a few months but then it came back with a vengence, sending me to the hospital 4 times (1 per month). Started HBOT and had 50 more sessions beginning in Jan 2023 and that took care of the problem. But scarring or other issues forced me to have a supra pubic catheter installed so no more bladder ugency and no self catheterization. I cannot hold much urine in the bladder so use a leg bag and overnight bag. Although it sounds awful, it is quite manageable. No leakage from urethra or from the catheter area where it leaves the body. I only had one minor bleed, no clots a few months ago, attributed to intense PT from spinal surgery. Have travleled with no issue, cruise, 500 mile car trips etc. my urologist advised me to take supplements as well as stool softener daily to avoid constipation. d-mannose, hyaluronic acid, collagen peptides. I don't know it is has helped but so far I am thrilled.
Posted 9/25/2024 5:32 AM (GMT -5)
I had HDR for my prostate in 2014. The clots began in early 2023. Had HBOT starting in late August of '23. Clots & bleeding stopped after 40 treatments. So far, so good on that front.

Still dealing with bladder leakage, retention, and constrictions - one of which was handled in surgery a couple of years back. Currently looking into a sacral nerve stimulator (ie Interstem).
Posted 9/25/2024 7:00 AM (GMT -5)
Tde, do some reading on installation of a suprapubic catheter. I had retention, etc and has restored my quality of life. I also considered interstim, but my Dr said it is not 100 percent effective in eliminating bladder spasms which occurs for me when I try to hold urine in bladder. The tibial nerve stimulation did not work for me.
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