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Six months ago I had a PAE to help relieve my BPH symptoms. The procedure did help, somewhat, however, I continue to consider other, more aggressive options, to improve my urinary issues.
So, I began to discuss both laser and TURP options with my urologist (not the one who did the PAE) and he said that we needed to do a cystoscopy before he would consider any type of invasive procedure. As I had HD Brachytherapy three and a half years ago for prostate cancer, he said that it was possible that my current BPH symptoms were related to the radiation and might not be helped by laser or TURP and that those procedures might lead to incontinence.
So, a week ago I went in for my cystoscopy. I took two Tylenol tablets before to take the edge off any pain. The procedure was less painful than I had expected - I would say half as painful - just a few little moments of pain. The whole thing was over in a couple of minutes - actually quite easy.
Then, the nurse did an ultrasound PVR and I still had 178cc of urine in my bladder. This confirmed my speculation that my prostate was growing again and making it difficult to empty my bladder.
After my PAE I went off Flowmax. After the cystoscopy my urologist suggested I go back on it again as an alternative to any type of surgery, so I did. But, on both Tuesday and Wednesday I had incidents of incontinence and felt a tremendous urge to urinate. This has never happened to me before. I thought it was because I was back on the Flowmax and my bladder muscles were relaxing.
Then, by Thursday I had an urgent need to pee every 15 minutes and the stream was very painful - like peeing hot sauce. My urologist ordered a urine culture and it came back negative - no infection.
By Friday, some blood came out in the urine, and by the afternoon blood clots came out as well. I was still running to the bathroom every 15-20 minutes. I went to the urology department but my doctor was on vacation for a week, so I was on my own.
Saturday night was the worst - I barely slept. I must have gotten up from the bed 20 times to pee, every 15 minutes at first then I was able to last a bit longer as I got sleepier.
By Sunday (yesterday) I had a bad headache that lasted the entire day. I decided to go back on the Flowmax, as I was suspecting that my prostate was swollen and was the cause of my discomfort. It helped and I didn't have any incontinence incidents after that.
Between the Flowmax, Tylenol and Ibuprofen, I was able to feel some improvement. I began researching negative after effects of cystoscopy and it turns out this is not a benign procedure.
What I have been able to determine is that there was some tissue injury from the scope causing bleeding and pain when urine is passing over it - possibly some bladder muscle injury. The prostate definitely feels a bit painful and swollen, although improving today (Monday). No more blood or clots are being passed.
I am definitely able to pee better and last night I did sleep a bit better, but when I first tried to get to sleep I did get up every 15 minutes for the first 2 hours.
After the procedure last Monday I was not given any information that these negative issues might occur. I had to research this on my own. For most of the week I didn't understand what was going on.
From my research I have learned that a cystoscopy is not normally required pre laser or TURP, but my urologist wanted to rule out any type of bladder cancer because of my prior radiation to the prostate. As he is robotic surgery guy, he generally has negative things to say about radiation treatment. However, I have two friends who had the robotic surgery (RRP) and they both went through absolute hell after - one is still incontinent after three years. So, if I had to do it all over again, three years after radiation, I would still make the same choice. I decided it was better to have difficulty urinating rather than being incontinent.
What I have learned from this is that incontinence can have very negative quality of life consequences.
And, after my "week of hell" am not sure if I would do another cystoscopy unless it was absolutely necessary.
I would appreciate any thoughts from members of this forum about this. I still believe that my issues are being caused by an enlarged prostate and not from the radiation. My 178cc PVR tells me that even after I thought my bladder was empty it was actually 40% full!
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