Cystoscopy Side Effects

Men's health
1

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!

 

2

Hi Tom,

The symptons you describe following your cystoscopy reminded me of typical transient symptons that are very common the first week or so after one starts a program of self catherization (cic). They are caused by the bodies rejection of a foreign object (in your case a cystoscope) and again, they are very temporary in nature until the body adjusts. I have never heard this in case of cystoscopy, but the principle seems the same. My guess therefore is that there was no tissue issue, certainly not permanent, and more likely simply trauma. I'm surprised you didn't test positive for a UTI, but we're all different in that regard.

As to your PVR, 178ml is borderline in terms of watch n' wait versus more agressive surgical intervention, and I would have it repeated. You might want it repeated in conjuction with a bladder/kidney ultrasound where they will examine the health of your kidneys at the same time. I have a feeling that your kidneys have not been compromised, but it's the prudent thing to do with retention. The last piece of the diagnostic puzzle would be urodynamic testing, preferably video urodynamics. That would give you a good indication if a more agressive procedure in the future might help or not.

But back to your concern regarding cystoscopy, I think you will recover fully, and it was probably necessary for diagnostics. BTW you didn't mention what your urologist learned from it.

Jim

3

Sometimes a second PAE works better. Everything else is highly invasive.

4

For your friend who has been incontinent for three years, tell him to consider having and AUS implant, such as the AMS 800.  After two years of incontinence, it allowed me to have a life again.

5

Tom,

I had a cystoscopy a couple of weeks prior to a Urolift procedure last February.  The cystoscopy was to confirm that I was a candidate for the Urolift (size?).  Anyway, they gave one antibiotic pill right after the cystoscopy.  After 3 days it was clear that I had an infection.  I went back to the Urologist office and saw one of his partners.  While they did not confirm the infection visually (urine not that cloudy), they did send it out to a lab.  3 days later it was confirmed that I had an infection and was given additional antibiotics.  At its worse, I was in the bathroom every 15 minutes.  Fortunately, I was able to make it through until the 2nd antibiotic kicked in.  One week later, I had my Urolift procedure and dropped the Flomax (generic) I had been taking for the past year.  I don't know if this helps you since we had different procedures.  But, my problem with the cystoscopy was infection caused.

6

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.

7

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

 

8

Thanks for your reply Jim. I have had to do some CIC in the past but never had blood in my urine or anything like this reaction. When my urologist returns from his vacation I will have him order another urine test for infection and also another PVR ultrasound. There is yet another procedure that I will request that I had prior to my prostate cancer radiation - a volume study. Actually, it was quite pleasant - they used an ultrasound probe through the rectum - well lubricated and comfortable, and they were able to measure the actual volume of the prostate. In my case it was 56gm. After my PAE last August it felt like my prostate got smaller. A PAE usually reduces the size by about 30%. If I have another volume study and the prostate it back up to 56gm or more, then I will know that it's growing back. 

As for the urodynamics test, I am not yet ready for another catheter to be inserted up the tube yet. I need to heal from this cyctoscopy first. The passing of blood on the fourth day and the blood clots told me that there was some tissue damage done - hopefully, nothing permanent. 

Tom

9

David,

Yet, I am considering another PAE - thanks for the suggestion. I only had two issues with the PAE. The first was that I had to lie on my back for many hours so that the puncture wound would not bleed. During this time my bladder kept filling with urine and I had to request a Foley catheter. The nurse drained off 600cc of urine! I felt much better after that. Also, there was prostate swelling for two weeks after I got home, so I had to double up on my Flowmax and take Ibuprofen and Tylenol. That irritation subsided in the third week post op and I continued to improve slowly after that. I am now 6 months out from the operation and supposedly the PAE reaches it's max effect by that time, but in my case the improvement has taken me only about 20% to where I want to end up. I totally agree that all other procedures are very invasive and potentially harmful. Even though my urologist does TURP he says there is a slight chance of incontinence and would prefer it if I could solve my issues through meds - like Flowmax. 

10

Mark,

Your issue with the cyctoscopy was caused by infection and mine was (so far) caused by some trauma to the tissues - peeing blood and had clots coming out, but the end result is the same. The prostate swells up and urine flow is blocked and it's very painful to pee. 

I will have my uro order another urine test. You understand what it's like to go to the bathroom every 15 minutes. On Saturday night I could barely get to sleep and must have gotten up 20 times to go to the bathroom. I was exhausted and had a bad headache on Sunday. Had to cancel a trip to relatives house to watch the Superbowl. 

11

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. 

12

Hi Tom,

The test you want is a kidney and bladder ultrasound study which also doubles as a PVR test. Important to check both bladder and kidney architecture. I understand your reluctance for more urethral probes, but the probe used for urodynamcics is quite small compared to a cystoscope or even an average size catheter. As to your blood clots, they don't necessarily mean tissue damage bu you should notify your doctor.

Jim

13

Hi Tom,

I agree with David. I've had 3 PAES, and the third one was the charm. Consider having another one.

There is no need for a catheter during or after a PAE unless you had to use them before it, and with 3 of them, I have never had one. Tell the doctor that there is a new, more high tech device which solves this problem. It's called a bottle (urinal). They normally try to use a catheter because it costs much more and makes the suits in the billing department happy, but as you well know, a catheter can cause many problems, including the prostate pain you had after your PAE. I've never had any pain like that after a PAE.

Neal

14

Neal,

After my PAE I was in the hospital recovery bed, and had a condom like catheter attached to my penis. Before the procedure I could barely urinate standing up, and certainly couldn't urinate lying down for hours, so my bladder kept filling up. My last trip to the bathroom was before the PAE at 7am. By noon I was in a lot of discomfort so asked the nurse to put in a Foley catheter. That drained off 600cc of urine and my pain/discomfort went away. After I left the hospital the prostate experienced some irritation and swelling, so I was in some discomfort for a couple of weeks, until the swelling went down and I began to experience some actual improvement from the PAE.

I would consider doing it again. You mentioned a bottle urinal. I don't think anything would have worked while I was lying on my back for hours - the only way I could empty my bladder was the Foley, and by 4pm after the Foley was taken out I stood up and made my way to the bathroom. Are you saying you were able to empty your bladder lying on your back in the recovery bed?

15

Thank you soo much for sharing with us. The information will help me on choices in the future.

16

They had me pretty well knocked out most of that time, but my wife says I did, and I must have, because there was no way I could have gone that long without urination. I do know that I had no catheter

Neal

17

And, I was able to urinate without a catheter before the procedure. I know that there are men who can't, and they would probably need a catheter before procedure.

Neal

18

Hi Tom,

DId they use a condom catheter or a Foley? Two completely different things. If you could void with a condom catheter than you could most probably void with a urinal on your back. One is not necessarily better than the other. Both are non invasive. A Foley on the other hand is a tube that goes into the bladder. That will work if a condom catheter and/or urinal won't.

Jim

19

Jim, 

Condom catheter was used but didn't work until I requested the Foley - and that worked. Impossible for me to urinate lying on my back without the Foley. 

20

I had a PAE 3 days ago and the insertion point of the catheter was in my forearm near my wrist. After the procedure, a pressure band was placed over the insertion point and was left on for about 40 minutes.