I had physician appointment today for possible hyperbaric oxygen therapy (HBOT) 40 treatments. I had salvage IMRT to bed and pelvic lymph nodes 8/2022. I felt great for nearly 2 years until cystoscopy on 7/31/24 recommended by MO because of a few very very small clots noted in urine but no real blood noted. After cystoscopy I basically had blood in urine for 5 months every week or two for a couple days at a time. Trying to understand the seriousness of the bleeding from doctors has not been forth coming. Today the doctor told me my situation was at the lower end of what she sees from patients having HBOT. I asked her if it might be like having hemorrhoids bleeding in that the area gets irritated and bleeds but I could live 10 years like that with no real problems (for example). The blood in urine is actually less than from hemorrhoids I've rarely had. She said yes there are people like that, but also radiation can be like the gift that never stops giving and over time it can get worse. The thing that put me off was the potential side effects of increased cataracts and permanent vision changes which she indicated were not exactly rare but rather common. Has anyone had these charges to eyesight or other side effects. I'm thinking about postponing HBOT to see if bleeding improves. It's going on 3 weeks since any. Thanks for any experiences or thoughts re HBOT.
Side effects after hyperbaric oxygen,... - Advanced Prostate...
Side effects after hyperbaric oxygen, any experiences?
It sounds like the cystoscopy caused the bleeding. If it isn't causing anemia, I think you are right to see if it will heal on its own.
Thanks for your timely reply. Of course seeing blood in urine after 73 years of none is hard to get used to, I actually feel pretty good and could easily live with it. I'll give it some time. Thanks again for your help.
Greetings JJ. I live with Late Hemorrhagic Radiation Cystitis as a result of Salvage Radiation dating back to 2012 - four years after radiation before the bleeding first appeared - thus the comment about radiation continued giving. The docs comment about lower end likely referred to the bleeding/clots.
Ignoring the bleeding and hoping it goes away works for some - some of us are not so lucky and the bleeding will turn to clotting, shutting down the bladder and creating the need to get an emergency catheter and bladder clean out. Rinse and repeat.
I did 60 rounds of HBOT and it greatly reduced the volume of blood loss and frequency of clots, but cure did not come for me.
Keep a log for three months documenting dates and number of times per day so you have a formal record to discuss with the Urologist. Pay attention to the clots - if/when you notice they are getting larger and/or increasing in volume, the problem is worsening.
I had no side effects with HBOT, but read that some folks experienced them. Good luck.
Your question about blood in urine (haematuria) is separate from the hyperbaric oxygen issue.
The haematuria may well be due to radiation damage to bladder wall. Regular cystoscopy to monitor for secondary bladder cancer may be indicated. It is not due to haemorrhoids. If heavy and causing clots it can cause bladder neck obstruction (unpleasant) and your doc should have mentioned this.
The other cause of haematuria is renal disease but this is microscopic and would not be obvious to naked eye.
Don’t know pros and cons of hyperbaric oxygen. Suggest you use ChatGPT for some basic info on O2 therapy.
Thanks for your reply Doctorsceptic, all good things to consider. I am doing my research, the doctors have been generally in a hurry and recommend HBOT seemingly routinely, other than doc interviewing for HBOT who did a better job of putting my level of bleeding ("lite-mild) compared to others and potential side effects of permanent vision changes etc. Thank you
I should have said visible haematuria is UNLIKELY to be renal - but if mild worth checking for proteinuria and renal function just to be sure.
Useful comments from Franky B4 below.
I just finished 40 sessions of hyperbaric oxygen therapy for radiation cystitis. (My cystitis started 10 years after radiation and resulted in terrible retention episodes. The cystitis was confirmed on a cystoscopy. Early HBOT is more successful than late so I moved quickly.) I had no significant side effects.Some patients feel energized by the therapy and others feel fatigued and I fell into the latter camp but it was not too bad and at about 1 month after I am almost 100%. I also had eyesight changes due to the pressure affecting the shape of the eye but I was told it takes a while to revert and mine hasn't yet. I just wear an older prescription and am playing golf, driving etc.,without difficulty. No other issues. I was told radiation cystitis is progressive so I wanted to get ahead of it. No blood or retention episodes since but time will tell. I was approved for 60 sessions and only did 40 because of the progress made but I have 20 if needed. Good luck.
My husband had radiation cystitis and would bleed and have clots. His oncologist recommended adding Vitamin C three times daily and Vitamin E three times daily. The bleeding has stopped. Might want to try that first 🤷♀️
The poor eyesight and permanent vision changes are from the radiation? Or from the hyperbaric oxygen therapy?If from radiation, I haven't heard or read that before. Thanks.
Poor eyesight is possible side effect from HBOT. What got my attention is doctor said this is more common than rare, I liked her input compared to urologists who just seemed to recommend without much discussion. Thank you
Found this at NIH - “A rare but potentially overlooked adverse effect of HBOT is the development of cataracts.”
I’ve not heard this as a worry before. I had cystoscopy after bleeding to ensure no bladder cancer. I then had 40 sessions - solved bleeding and little bit of incontinence after the cysto.
Minimal bleeding just returned with minimal incontinence. Current research is looking at additional 20 for this. 40 seems to not be enough.
I want to do all I can to improve the bladder tissue.
I’ve been through HBOT twice, 30 & 34 sessions, for post radiation issues with positive results both times. Yes there will be changes in vision. Most come back within a few weeks of end of treatment. My first time I was pre cataract and it sped up that development which was a positive for my life. Now I can both see my golf shot and also see the scorecard. As others have mentioned the longer you wait the less likely HBOT will help. Sooner is better. Good luck.
Finished HBOT two months ago for rectal bleeding and non-hemorrhagic cystitis (just frequency/urgency).
Yes, the vision changed for everyone there unless they had had cataract surgery. I was told almost all vision changes are temporary and mine was fully restored at two weeks after as opposed to the six weeks they told me to expect.
Better sooner than later. It’s easy, just boring. You’ll become a reader if you aren’t already.
Thanks for your reply SongoFred. That's very helpful feedback. Good luck
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