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Cystoscopy Side Effects

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tom86211
tom86211

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

40 Replies

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  • tom86211
    tom86211

    Posted

    Jim,

    Here is the top of the first urine culture report:

    Urine culture result Final Report

    Greater than 100,000 col/ml Coagulase Negative Staphylococcus NOT S.

    saprophyticus

    Sensitivity not routinely done.

    H7D  

    Here is the same from second report:

    Urine culture result Final Report

    Greater than 100,000 col/ml Coagulase Negative Staphylococcus NOT S.

    saprophyticus .

    Sensitivity not routinely done.

    Isolate held for one week.  

    I looked up how to read a urine culture report on the net and it said that if there is greater than 50,000 col/ml you have a UTI. Both reports said 100,000, so I don't know why my urologist said I didn't have an infection when I was in clear distress. I have had these before and know what they feel like. The Cipro eventually knocked out most of the symptoms within four hours of taking the first tablet. 

    Tom

     

    • uncklefester
      uncklefester tom86211

      Posted

      It's scarey when you think about it. You use up your 10 minutes of Doctor time for this appointment. You'll have to schedule another appointment to get to the bottom of your problem

    • jimjames
      jimjames tom86211

      Posted

      I'm not a doc but it's possible the urologist read the staph as contamination, regardless of how many co/ml.  I wasn't aware that Cipro worked that fast so either you needed it or you were going to clear up anyway and it was coincidental. Whenever I do a urine culture for a GP like at an urgent care center, they always want to treat with antibiotics based on my UA and sensitivity study. My urologist, on the other hand, may not want to treat based on my symptons and the type of bacteria. There is something called asymptomatic bacturia which is common in certain conditions and it's identical to a UTI in testing, but it's not treated with antibiotics. I guess I'm saying I don't want to hang your urologist without the full story. Did you ask him why he didn't want to treat you with the positive staph culture? I think based on his answer you could get an idea whether he had a point or not.

      Jim

    • alan86734
      alan86734 jimjames

      Posted

      Hi, Jim,

      I assume you are referring to "colonization bacteruria"? I was having similar problems but persevered with my urologist and staff. These are much needed "friendly bugs" so please don't kill them off. And, sure enough, it is quite some time since my last bout of apparent UTI and I'm still alive and kicking.

      Warm regards. alan86734.

       

    • tom86211
      tom86211 jimjames

      Posted

      Jim,

      I had the cystoscopy on Monday. By Wednesday I was in distress and by Thursday running to the bathroom every 15 minutes and starting to pass blood. Went to lab - did 1st urine analysis. Urologist said no infection. I didn't believe him. Following week, still in distress but no blood in urine. Tried to contact uro for a second analysis, but he was on vacation, so I contacted my regular doctor. Exactly one week after first analysis did second one. My doctor said it was positive for staph infection and I started taking the Cipro. Within four hours of taking the first tablet 80% of symptoms were gone - just 1 tablet! Took the Cipro for 10 days. When my uro came back from vacation I had an appointment to meet with him. I did NOT mention the urine test because I didn't want to get into an argument with him. He doesn't like it when I suggest anything - just wants me to do what he tells me to do. 

      I would be happy to send the urine test results to anyone who really knows how to read these and get a second opinion, but the two look basically identical to me. It's possible that my uro was thinking vacation and either didn't really look at my first test result, or misread it, or who knows. There are instruction on how to read the test results online. 

      Tom

    • jimjames
      jimjames alan86734

      Posted

      asymptomatic bacturia and "colonization" are basically the same.

    • jimjames
      jimjames tom86211

      Posted

      Tom,

      Seems the whole thing is academic at this point. You took the Cipro and are now feeling well. Not sure what could be gained by sending your test results to anyone else. And even if you wanted to in order to "test" the doctors, you would have to include a very detailed history along with them. If you have been otherwise happy with your urologist, I might just tell him what transpired when he was on vacation and ask him for his rationale for not treating. If the answer satisfactory, keep him. If the answer isn't satisfactory, then consider moving on to another urologist. The point I was making was a more general one and not necessarily specific to your case. That point is that treating "UTI's" is not always cut and dry and circumstances and experience can dictate treatment as much as looking at test results.

      Jim

  • glenn77
    glenn77 tom86211

    Posted

    Two comments:  1) I would seriously be looking for another urologist, just because of his "attitude" problem.

    (2)  Tell your friend who is incontinent to look into having an AUS implant.  I was totally incontinent for nearly two years.  After having the AUS implanted in November of last year, I'm done with diapers and condom catheters and bags, and my quality of life is greatly increased.  My implant surgeon is in central NC.

    Glenn

  • ricardo15858
    ricardo15858 tom86211

    Posted

    Hi, I had a cystoscopy done 2 years ago. It was very uncomfortable for me. The reason why the procedure was done it was because of microscopic hematuria but at the moment I had no symptoms. After the procedure was done I had burning for 2 days. Afterwards I never felt the same, very weak down there and urine weak. The results of the procedure didn't showed anything the doctor mentioned everything was fine. After 2 years I started developing a extremely burning sensation in my urethra and it won't go away. I went to my Primary Physician and no infection. Right now going to a new urologist and hopefully they can find what is wrong with me. In your experience what is the best exam that can diagnosed if I have a damage Urethra.

    • CLJim
      CLJim ricardo15858

      Posted

      Ricardo hope you have found a new urologist and your urethra is not damaged.

      I also had microscopic hematuria on urination and pain on urination with urgency to urinate....3 weeks ago ...I had HDR Brachytherapy at UCLA for intermediate PC in March of 2018 ..........CT and Pet Scan nothing found 2 weeks ago.July 2019......no cancer cells found in urine had cystoscopy 11 days ago nothing found and been absolutely miserable ever since first pain on right side where uretha is then pain on right kidney.....now pain letting up and pressure on abdomen that brings on nausea is present.....Had heavy blood in urine first three days after cystoscopy then let up with occasional orange colored when urninating . My urologist has not offered any help says bladder and abdomen irritated due to prior radiation . Said flush out with lots by drinking lots of water...Did so and urine went clear now goes in an out of gold color. Becoming weaker and sleeping all day...I do not know if this is Cystitis or damage was done during my cystoscopy . Called to schedule appointment at a major clinic and they mention doing another cystoscopy and I respond absolutely not why would I do that when noting found. Getting desperate as to what is going on inside my abdomen and bladder

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