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Re: EBRT/IMRT potential long term damage to bladder

Aloha,
It has been a painful weekend. I suspect that the bladder valve was damaged during EBRT/IMRT. This post cysto pain happened after the last cysto. When irritated the valve feels like you are starting an orgasm, then painful spasms until it passes. The last time I did not have a catheter, so the pain happened when I voided. This time with the catheter, it happens when ever I sit down or have a BM.
I fly over to Oahu for these procedures, did not know I would be flying back with a bag attached to my leg, so I wore shorts, long flight home.
Joe

Re: EBRT/IMRT potential long term damage to bladder

Hey Joe,

What you describe is essentially what I've been going through since May. Had cysto and then a "gentle TURP" in August. What was revealed was a severly irritated bladder and radio-necrosis of the prostatic urethra. The TURP was done to clear a blockage in the bladder neck area. Before thes late symptoms set in I was confident that the worst was over and that I was well on my way to leading a pain free and healthy lifestyle again.

I am now faced with daily pain but the TURP has seemed to help with the blockage although at times peeing has become difficult preceedeing sloughing of tissue that has died off.

My radiologist is confident that things will resolve over the next six months or so and that gives me hope.
I am currently half-way through a sixty session Hyperbaric Treatment. During this time things have definitely improved but I still need a couple Vicodin nightly to resolve the pain issues. Since Hyperbaric started I have also been able to sleep for a couple three hour stretches each night which I havent been able to do since the Lupron kicked in 3 years ago. Although I'm now passed all the symptoms of the Lupron (I hope) I am now also having stress incontinence which disposes me to wear a couple diapers each day.

I will say this about the Hyperbaric though - it definitely has been proven to increase oxygen to the margins around the necrotic prostatic tissue and bladder damage which should improve the chances of healing. Beyond that I can't make any claims that it is the miracle cure but in theory it is supposed to speed up the healing process and I have made progress in diminished pain and other urinary symptoms.

I too have had extreme bladder spasms which have been greatly helped by Detrol although at times I become extremely constipated ( I never had that problem in my life before) and have to take bulk laxative tablets and maintain a diet that is very high in raw vegetables and fruits while avoiding a lot of red meat and gluten products. A couple of the other bladder spasm drugs are Enablex and Toviaz.

Luckily my three month PSA fell to .16 from the earlier reading of .31 which I hope means that I'm close to establishing a nadir.

If you would have asked me 5 years ago if I coulde have put up with all of this pain and bulls**t, I would have said that I'd prefer to have the plug pulled but I'm keeping confident and staying positive. I know that some day I'll be back working out (I'm down to 220 after being 270 on Lupron) and having a life again.

You and I are part of the < 1% of radiated patients that have the dreaded late reaction. As we say in Alaska in the dead of winter "Hang in there, warmer days are a comin'."

Take care - p (Alaska, USA)

Re: EBRT/IMRT potential long term damage to bladder

Aloha Pat,
Have you had a biopsy of the bladder liner at or near the irritated areas? If so what was the result?
Do you experience the painful spasms post cysto or all the time?
Thanks,
Joe

Re: EBRT/IMRT potential long term damage to bladder

Joe,
I had five biopsy cores taken from the lower bladder and tissue sent in that was removed from the prostatic urethra, they all came back negative. The spasms started a couple months before the cysto which revealed several areas of redness and were the reason for the bladder biopsy. The spasms are pretty much under control now but after the procedure I am suffering from stress incontinence which seems to be improving.

I ended up with a cath for a week after the procedure and ther was some blood in the bag for a couple days so I don't know where it came from. Funny thing is that I was continent for a week or so after cath removal but then went downhill form there.

Take care - p (Alaska, USA)

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