Cystoscopy Side Effects
Posted , 18 users are following.
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!
0 likes, 40 replies
lester90053 tom86211
Posted
Doctors will tell you what they want you to know but they will not tell you what they don't want you to know. Furthermore most doctors have never gone through the suffering and procedures that their patients go through.
tom86211 lester90053
Posted
Lester,
Exactly! Three years ago my uro wanted me to do CIC and gave me a 16fr Coude Tip catheter and sent me into an exam room all by myself with a tube of lubricant. I had never done this before and was unable to get the catheter up the tube - painful and scary. After, I asked him if he had ever tried this on himself and he said no. I told him he should try it before telling someone else to do it.
Later I got some samples of hydrophilic catheters without the coude tip, and I was able to self cath - a better experience, but still difficult. Some of my issues were: do I stand or sit? Do I do this in the shower or over a toilet? Where does the pee go? How to I get the tip to push into the bladder when it's stuck? The thing was very slippery and hard to hold - do I use gloves? It was certainly a learning experience.
alan86734 tom86211
Posted
Hi, Tom,
I concur entirely with Jim's advice. I've experienced exactly the same outcome when changing to a larger catheter diameter, although not very often.
I hope you resolve your problems quickly; that's what we're here for!
Regards, alan86734
richard25210 tom86211
Posted
tom6446 tom86211
Posted
tom86211 tom6446
Posted
You were lucky, very lucky. My problems started within days of the scope and peaked 5 days after - bleeding, infection, trips to the bathroom every 15 minutes. I think that when my uro pushed the scope into my bladder this caused a tear in some tissue. And, why was the scope not properly sterilized? I have never gotten an infection from a catheter. Anyway, count yourself one of the lucky ones.
tom6446 tom86211
Posted
I guess so Tom. I didn't have anytime to think about it or ask questions, it was done during an office visit. I guess after researching, I c
an see thst if not done properly it can tear tissue and cause infections.
Whats next for you? The infection should be gone by now, I hope. Tissue repairable?
tom86211
Posted
lily33064 tom86211
Posted
tom86211 lily33064
Posted
lee56659 tom86211
Posted
uncklefester tom86211
Posted
I had a cystoscopy Nov. 2015. The procedure qasnt bad pain wise. After my cystoscopy I was in pain for 6 months. I was given multiple rounds of Bactrim. Uralyisis showed no infection but I'd bet a paycheck I had an infection inside the prostate. My uro at the time seemed to have no interest in getting to the bottom of my problem.
tom86211 uncklefester
Posted
Based on what I went through and what you went through I will not have one done again. I had two urine tests done. My urologist said, after looking at the first report, that I didn't have an infection. But, my symptoms were so bad I had my regular doctor order a second analysis. After that report came back my doctor said I did have an infection and ordered cipro for me. I looked at both reports and they were identical, so my urologist misread the first report, in my opinion. I now know what to look for in the report.
nealpros tom86211
Posted
Neal Pros
jimjames tom86211
Posted
I don't know the specifics of your case but in general it is possible for two doctors to look at identical labs but interpret them differently in regard to UTIs. I'm not saying your urologist was right or that your regular doctor was right, just saying that it is possible no one misread the lab report but just came to different conclusions.
Jim