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Urine flow frustrations. Stricture?

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User
Posted 09 Apr 2022 at 08:26

I am 9 weeks post op after what was recorded as a “very difficult anastomosis”.

Although oncological signs are all good (ultralow PSA, clear margins), I am frustrated by perineal pain, and the inconsistency of urine flow which varies from painless and free flowing urine for days at a time to the complete opposite. This was the case during my bout of COVID-19, but now again restricted flow with sharp pain.

Surgeon has claimed that the healing is still in such a state of flux (scar tissue forming, softening) that it is too early to tell the extent of any stricture. Have urine flow test scheduled in 7 weeks time.

Would appreciate hearing from others in a similar situation

User
Posted 28 Jul 2022 at 14:16

I had an NNSRP last December,

Since then have passed eight surgical clips, each time just before I pass the clips my flow rate drops off to less than 2ml/s and my urine turns milky green. I have been in retention once due to a bladder neck stenosis and had a bladder neck widening procedure to resolve this with a catheter attached for two weeks. Three clips were past in the two days following the catheter removal. 

My Consultant performed a cystoscopy  after the eighth clip and found no more signs of clips or anything untoward. Flow rate is currently 20ml/s, and has been for the last eight weeks since passing my last clip.

Just posting this as I’m told this is not common, so thought I would add to the pool of information. 

User
Posted 28 Jul 2022 at 14:44

Moz, I think you must hold the record for the largest number of clips found. There are a few of us on here who have had clips removed. Supposedly it is a 1 in 500 chance of migration. I only had a mere 3 or 4. 

What was it like passing the clips, mine were all removed by cystoscopy. I was told there were probably eight used during the op ,so you might be empty now

How is the continence after all that ?

Thanks Chris 

User
Posted 28 Jul 2022 at 15:45

Hi Chris,

              I have read an article somewhere about someone having 13 clips that migrated into the bladder and calcified causing a restriction, and I read somewhere else that between eight and fourteen clips are used. My Surgeon was helpful, he said he used a finite number 🤔. 
In the early days after my original catheter came out and I was passing large clots of blood my flow rate was all over the place, caused by these clots. During this time I found my first clip on the edge of the toilet seat and didn’t even know then what it was. It maybe I passed some at this time without realising. It is no different to passing a large clot, you don’t feel pain, just a slowing of the flow whilst you urinate and then a sudden increase in flow. If you are standing up at the time you tend to miss the bowl and a ping is heard on the back of the toilet seat as the pressurisation fires the clip out. 
Continence wise I think I am pretty good. If I cough with a full bladder I leak a small amount. If I drink alcohol then I can leak a small amount when I bend. All well contained with a small pad. 

User
Posted 09 Apr 2022 at 09:03

T , my post op water works were fine for a few weeks.  After a couple of months I started with smelly urine and a slow flow. My post op slow flow was caused by the migration of hem o lok clips and a build up of scar tissue at the joint.At three months post RARP a cystoscopy found the problem.

My surgeon was confident the anastomosis would be okay, but it wasn't. My catheter was swiftly removed by a senior nurse and my surgeon was convinced that caused trauma to the joint and caused the stricture. The first surgical clip was floating around in the bladder.  

Hope you get sorted.

Thanks Chris

User
Posted 16 Apr 2022 at 12:32

Hi

 

Not sure i can help but i may be on a similar journey- had my prostate out January was ok then gradually couldnt pee at all. Had an emergency Bladder neck incision last week and back to catheter. So will wait and see if this fixes the flow, i know it is tricky.

keep us updated

 

Dave

 

User
Posted 16 Apr 2022 at 16:13

Hi Tomi_r, I'm now 7 weeks post op and I'm experiencing similar problems. One minute it's flowing fine, the next the flow has stopped altogether. My original catheter had to be removed with brute force and I can't imagine this would have done the bladder neck any good all. I've just updated my post about this today, if its of any help to you (look at recent conversations). Chris

User
Posted 18 Apr 2022 at 13:33
Following my RARP in June 2021 I enjoyed peeing like a horse for a few months but this has gradually changed and I now have many of the pre op symptoms of hesitancy and poor flow. I assume this is down to scar tissue building up as others have commented. It has not bothered me so much yet as its still much improved on the situation pre op. Im just hoping it does not deteriorate further to become a stricture that needs dealing with.
User
Posted 18 Apr 2022 at 13:56

Oooh - if you are lucky you will get a flexible cytoscopy! I use the word 'flexible' loosely!
Hermit

User
Posted 20 Jul 2022 at 19:15

Tomi, my stricture was probably caused by the traumatic removal of the post op catheter. I like quite a few on here have also had issues with the migration of hem o Lok clips into the bladder or urethra. 

My surgeon did take a very conservative approach to treating my stricture. I was 99 percent dry four days after catheter removal and he did not want to compromise my continence. I went back into theatre or clinic on around 12 separate occasions, mostly there were for dilatations but on a couple of occasions he did cut into the scar tissue. I also did some intermittent self dilatation to keep the stricture open.  I also did some progressive ISD where I would insert a size 12 catheter, remove it and insert a 14,then repeat the process with a 16 or even 18. I did regain the continence after the procedures sometimes after a few days sometimes a bit longer.

I was due to have urethral reconstruction but unfortunately salvage RT damaged the bladder and there was no point repairing the urethra. 

It is not unheard of for it two take two or three attempts to sort the stricture. I got a bit obsessed with checking my flow but it was useful as when it got to slow I would book in for another dilatation.

Hope yours get sorted a bit quicker and easier.

Any questions just ask.

Thanks Chris 

 

 

User
Posted 20 Jul 2022 at 19:54
Hi Tomi

I had similar, post Op I had urge and frequency issue. After about 9 to 12 months flow deteriorated initially to 13ml/sec. Gradually after about 3 years it was down to 3ml or less. So frustrating to take over 10 minutes to pee. The only way I could empty was a sort of push down then squirt out and repeat continually till there was nothing left.

I was offered a rigid cystoscopy under general so that they could cut or dilate depending what was found while I was still under. I put it off until 3.5 years post op for fear of continance issues if they had to cut the bladder neck. Eventually fear of retention and the inconvenience forced me to concede and have the procedure. I made it clear to the Surgeon that I wanted to avoid an incisions if possible.

It turned out to be a stricture in the Urethra just below the (now only) sphincter and he did a progressive dilation.

I was taught intermittent self catheterisation which I found very difficult at first. At first once per week then had to increase to twice as it started to close up. After the dilation my flow was 25ml plus per sec and I regretted waiting so long.

Over 2 years later and it recently got more difficult and I am using a 16f to open it then following with the 18f. Maybe it will improve again or I will have to drop in size until I need another stretch.

Sorry if to much info but glean what's useful.

All the best with your situation

Cheers

BILL

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User
Posted 09 Apr 2022 at 09:03

T , my post op water works were fine for a few weeks.  After a couple of months I started with smelly urine and a slow flow. My post op slow flow was caused by the migration of hem o lok clips and a build up of scar tissue at the joint.At three months post RARP a cystoscopy found the problem.

My surgeon was confident the anastomosis would be okay, but it wasn't. My catheter was swiftly removed by a senior nurse and my surgeon was convinced that caused trauma to the joint and caused the stricture. The first surgical clip was floating around in the bladder.  

Hope you get sorted.

Thanks Chris

User
Posted 16 Apr 2022 at 12:32

Hi

 

Not sure i can help but i may be on a similar journey- had my prostate out January was ok then gradually couldnt pee at all. Had an emergency Bladder neck incision last week and back to catheter. So will wait and see if this fixes the flow, i know it is tricky.

keep us updated

 

Dave

 

User
Posted 16 Apr 2022 at 16:13

Hi Tomi_r, I'm now 7 weeks post op and I'm experiencing similar problems. One minute it's flowing fine, the next the flow has stopped altogether. My original catheter had to be removed with brute force and I can't imagine this would have done the bladder neck any good all. I've just updated my post about this today, if its of any help to you (look at recent conversations). Chris

User
Posted 18 Apr 2022 at 13:33
Following my RARP in June 2021 I enjoyed peeing like a horse for a few months but this has gradually changed and I now have many of the pre op symptoms of hesitancy and poor flow. I assume this is down to scar tissue building up as others have commented. It has not bothered me so much yet as its still much improved on the situation pre op. Im just hoping it does not deteriorate further to become a stricture that needs dealing with.
User
Posted 18 Apr 2022 at 13:56

Oooh - if you are lucky you will get a flexible cytoscopy! I use the word 'flexible' loosely!
Hermit

User
Posted 15 Jul 2022 at 11:13

I am 12 months post prostatectomy and have the opposite problem - urination frequency. Average 4 times per night. Not sure where all the urine is coming from! During the day have to go hourly. Had cystoscopy and they found chronic bladder inflammation. I was  told to drink less especially in evening and given medication for OAB which doesn't seem to work. Scheduled to have radiation therapy in August due to rising PSA which is 0.14.

User
Posted 20 Jul 2022 at 17:03

My six month update that may bring hope to some.

PSA remains ultralow <0.01, which IS the result we all want to see.

I’m also able to report that urine frequency is much improved, nicely dry at night and usually just once to empty the bladder during the night. Daytime is different and very much connected to what and how much I drink or am doing.

The disclaimer here is the flow and quantity.

At 4 months, 50-100 ml was usual and very frequent. I opted for acupuncture rather than medication to help stabilise the condition. Whether by Chinese medicine or the passing of time, my peeing volumes have increased from 250-300ml at night, but still varying from 100-300ml daytime. These are probably a little low.

My biggest issue is the flow itself, an extremely slow thin stream which I measured approx 2-3ml/sec. Very frustrating. Additionally, the bladder never empties fully, requiring some good amount of straining to that feeling of “empty”. That might add an extra 10-30% volume.

Am being reviewed by the consultant next week but would be glad to hear other accounts of what I assume is a bladder neck stricture. Should I be satisfied with outcome so far?

Edited by member 20 Jul 2022 at 17:28  | Reason: Added inf

User
Posted 20 Jul 2022 at 19:15

Tomi, my stricture was probably caused by the traumatic removal of the post op catheter. I like quite a few on here have also had issues with the migration of hem o Lok clips into the bladder or urethra. 

My surgeon did take a very conservative approach to treating my stricture. I was 99 percent dry four days after catheter removal and he did not want to compromise my continence. I went back into theatre or clinic on around 12 separate occasions, mostly there were for dilatations but on a couple of occasions he did cut into the scar tissue. I also did some intermittent self dilatation to keep the stricture open.  I also did some progressive ISD where I would insert a size 12 catheter, remove it and insert a 14,then repeat the process with a 16 or even 18. I did regain the continence after the procedures sometimes after a few days sometimes a bit longer.

I was due to have urethral reconstruction but unfortunately salvage RT damaged the bladder and there was no point repairing the urethra. 

It is not unheard of for it two take two or three attempts to sort the stricture. I got a bit obsessed with checking my flow but it was useful as when it got to slow I would book in for another dilatation.

Hope yours get sorted a bit quicker and easier.

Any questions just ask.

Thanks Chris 

 

 

User
Posted 20 Jul 2022 at 19:54
Hi Tomi

I had similar, post Op I had urge and frequency issue. After about 9 to 12 months flow deteriorated initially to 13ml/sec. Gradually after about 3 years it was down to 3ml or less. So frustrating to take over 10 minutes to pee. The only way I could empty was a sort of push down then squirt out and repeat continually till there was nothing left.

I was offered a rigid cystoscopy under general so that they could cut or dilate depending what was found while I was still under. I put it off until 3.5 years post op for fear of continance issues if they had to cut the bladder neck. Eventually fear of retention and the inconvenience forced me to concede and have the procedure. I made it clear to the Surgeon that I wanted to avoid an incisions if possible.

It turned out to be a stricture in the Urethra just below the (now only) sphincter and he did a progressive dilation.

I was taught intermittent self catheterisation which I found very difficult at first. At first once per week then had to increase to twice as it started to close up. After the dilation my flow was 25ml plus per sec and I regretted waiting so long.

Over 2 years later and it recently got more difficult and I am using a 16f to open it then following with the 18f. Maybe it will improve again or I will have to drop in size until I need another stretch.

Sorry if to much info but glean what's useful.

All the best with your situation

Cheers

BILL

User
Posted 28 Jul 2022 at 14:16

I had an NNSRP last December,

Since then have passed eight surgical clips, each time just before I pass the clips my flow rate drops off to less than 2ml/s and my urine turns milky green. I have been in retention once due to a bladder neck stenosis and had a bladder neck widening procedure to resolve this with a catheter attached for two weeks. Three clips were past in the two days following the catheter removal. 

My Consultant performed a cystoscopy  after the eighth clip and found no more signs of clips or anything untoward. Flow rate is currently 20ml/s, and has been for the last eight weeks since passing my last clip.

Just posting this as I’m told this is not common, so thought I would add to the pool of information. 

User
Posted 28 Jul 2022 at 14:44

Moz, I think you must hold the record for the largest number of clips found. There are a few of us on here who have had clips removed. Supposedly it is a 1 in 500 chance of migration. I only had a mere 3 or 4. 

What was it like passing the clips, mine were all removed by cystoscopy. I was told there were probably eight used during the op ,so you might be empty now

How is the continence after all that ?

Thanks Chris 

User
Posted 28 Jul 2022 at 15:45

Hi Chris,

              I have read an article somewhere about someone having 13 clips that migrated into the bladder and calcified causing a restriction, and I read somewhere else that between eight and fourteen clips are used. My Surgeon was helpful, he said he used a finite number 🤔. 
In the early days after my original catheter came out and I was passing large clots of blood my flow rate was all over the place, caused by these clots. During this time I found my first clip on the edge of the toilet seat and didn’t even know then what it was. It maybe I passed some at this time without realising. It is no different to passing a large clot, you don’t feel pain, just a slowing of the flow whilst you urinate and then a sudden increase in flow. If you are standing up at the time you tend to miss the bowl and a ping is heard on the back of the toilet seat as the pressurisation fires the clip out. 
Continence wise I think I am pretty good. If I cough with a full bladder I leak a small amount. If I drink alcohol then I can leak a small amount when I bend. All well contained with a small pad. 

 
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