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Bladder neck stenosis (Scaring)

User
Posted 20 Apr 2020 at 19:36

Hi. I had my RP late November 2019.

Home the following day and catheter removed after two weeks.

In Early March 2020 my flow rate progressively slowed until eventually I had to attend Accident and Emergency of my local hospital. after many failed attempts to insert a catheter later the same day I had a flexible endoscopy procedure and was dilated. I was sent home with a catheter.

The catheter was removed two weeks later but after a week I was back in hospital being dilated again. So as i stand here typing (more comfortable standing) i'm catheterised feeling concerned this might be a regular situation. I'm having a lot of discomfort /pain from the catheter at the point it leaves my body and regular have the urge to pee (indescribably strong painful urges to bee)

Apologies for the long winded intro but i thought it might help.

User
Posted 20 Apr 2020 at 21:40

Gremlin

It can take two or three dilations to sort the problem and you may need a small incision into the scar tissue but that can comprise the continence for a while. It normally took about 12 weeks post dilation for the flow to drop to about 0.5ml/sec. A week after catheter removal seem a very short time for the scar tissue to regrow, it could be swelling from trauma of catheter removal. Was it s urologist who used the camera. A catheter will cause spasms to the bladder and you may get bypassing where urine comes past the catheter and out of the penis, keep it all clean. You can can get anti spasm meds to ease the problem.

I have had about twelve dilations and also had three hem o lok clips migrating into the bladder and bladder neck. If you had the camera into the bladder they should have seen any clips, assuming they knew what a clip looks like. Clips are normally used in robotic surgery. 

Soreness at the tip of penis can be helped with a generous squirt of instilagel or hydrocaine down the side of the catheter. An infection can also cause pain at the end of the penis, available at chemists for £2-3.

There is one of our members who has a flow rate of around 5mls/sec and copes with it , 20mls/sec would be an average normal flow. 

I also performed intermittent self dilation in an attempt to keep the stricture open. 

Thanks Chris

Edited by member 20 Apr 2020 at 21:55  | Reason: More info added

User
Posted 21 Apr 2020 at 08:24

Gremlin 

I don't recall seeing instilagel or hydrocaine at Morrisons you may need a pharmacy.  

Scar tissue can be caused by urine passing into the joint or over tight stitches. Was it robotic surgery and if so how many robotic procedures had he done. Remember one of the site rules, we cannot name surgeons etc. 

Bit confused with "we don't do that here" did he mean because you were in A&E. 

How was you continence once the catheter was out ? Make the most of the catheter, it may save frequent visits to the toilet.

Having frequent treatments soon became the new normal for me , I am far from sorted, if you click on people's avatar you can read thier profiles. 

Thanks Chris

User
Posted 21 Apr 2020 at 09:14
Hi I have a bladder neck stenosis. They couldn’t get the camera into my bladder either. I literally was all set to have an op to open the bladder neck up but decided against it at the last minute as the surgeon told me I could end up incontinent. My flow is weaker but I cope ok with it and thankfully have not gone into retention.

At the time (2013). I read that bladder neck stenosis occurs in about 20% of patients who have had RP.

I wish you well

Bri

User
Posted 21 Apr 2020 at 11:52

Hi Gremlin

I'm in a similar situation. Had RARP early 2017 and flow started to deteriorate a while after. I had an appointment for a dilation pre op check next week but it's cancelled due to C19. My flow is down to 3ml max but diminishes to a dribble after about half way through, then I have to push and squirt. It seems to take ages to pee complety. I fear going into retention as well. When I eventually get the procedure it will be rigid cystoscopy under GA and I will definitely insist that it will be stretching only and no incision. I also suspect surgical clip migration could be the cause. More info on recent post on this thread below just for info.

https://community.prostatecanceruk.org/posts/t15955-RARP-Good-News

 

Good luck

Cheers
Bill

 

Edited by member 21 Apr 2020 at 11:53  | Reason: Make link work

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User
Posted 20 Apr 2020 at 21:40

Gremlin

It can take two or three dilations to sort the problem and you may need a small incision into the scar tissue but that can comprise the continence for a while. It normally took about 12 weeks post dilation for the flow to drop to about 0.5ml/sec. A week after catheter removal seem a very short time for the scar tissue to regrow, it could be swelling from trauma of catheter removal. Was it s urologist who used the camera. A catheter will cause spasms to the bladder and you may get bypassing where urine comes past the catheter and out of the penis, keep it all clean. You can can get anti spasm meds to ease the problem.

I have had about twelve dilations and also had three hem o lok clips migrating into the bladder and bladder neck. If you had the camera into the bladder they should have seen any clips, assuming they knew what a clip looks like. Clips are normally used in robotic surgery. 

Soreness at the tip of penis can be helped with a generous squirt of instilagel or hydrocaine down the side of the catheter. An infection can also cause pain at the end of the penis, available at chemists for £2-3.

There is one of our members who has a flow rate of around 5mls/sec and copes with it , 20mls/sec would be an average normal flow. 

I also performed intermittent self dilation in an attempt to keep the stricture open. 

Thanks Chris

Edited by member 20 Apr 2020 at 21:55  | Reason: More info added

User
Posted 21 Apr 2020 at 06:31

Thanks for your response.

The camera was never passed into my bladder. After the Urologist identified the restriction they inserted the thin guide wire and dilated the hole so I have not seen inside (Both times).  The Doctor didn't say anything about the cause of the scaring. I did ask about cutting the scar, the only answer i had was "we don't do that here" So i guess I'll have to put up with being dilated.

I think i'm getting a little depressed by the situation. It's not the dilation that bothers me it's the period of being catheterised. ( i know I should not get low. I have a lot to be thankful for)

I'll try the instilagel or hydrocaine (Depending what Morrisons have) and let you know how it goes.

You must get/be really frustrated at having to go through the dilation procedure so many times. My twice is getting my down. I hope you are all sorted now :-)

User
Posted 21 Apr 2020 at 08:24

Gremlin 

I don't recall seeing instilagel or hydrocaine at Morrisons you may need a pharmacy.  

Scar tissue can be caused by urine passing into the joint or over tight stitches. Was it robotic surgery and if so how many robotic procedures had he done. Remember one of the site rules, we cannot name surgeons etc. 

Bit confused with "we don't do that here" did he mean because you were in A&E. 

How was you continence once the catheter was out ? Make the most of the catheter, it may save frequent visits to the toilet.

Having frequent treatments soon became the new normal for me , I am far from sorted, if you click on people's avatar you can read thier profiles. 

Thanks Chris

User
Posted 21 Apr 2020 at 09:11

Hi.

Yes my procedure was robotic. I looked the surgeon up online and he has a large number of robotic procedures under his belt. 

the "we don't do it here" comment was a urology doctor in the day/out patient clinic at the hospital. The procedure was done in what seemed to be, not the regular location. I think it was part of the patient separation system they have in place to cope with the Covid virus.

I did not want to complain or fuss as while the Doctor was dealing with me she was on call for the main hospital. The poor woman was obviously very busy.  She was paged just before she started on me and again just after she had fitted the catheter. I should add the treatment was top draw and I mean no criticism of the staff. I'm going to town to see if i can pick up some of the medicine you mentioned.

 

User
Posted 21 Apr 2020 at 09:14
Hi I have a bladder neck stenosis. They couldn’t get the camera into my bladder either. I literally was all set to have an op to open the bladder neck up but decided against it at the last minute as the surgeon told me I could end up incontinent. My flow is weaker but I cope ok with it and thankfully have not gone into retention.

At the time (2013). I read that bladder neck stenosis occurs in about 20% of patients who have had RP.

I wish you well

Bri

User
Posted 21 Apr 2020 at 10:17

Thanks Bri.

Having experience retention I'll be happy if it settles down to any sort of manageable flow. I hope it will not get to the point where i'm offered the scar removal option. I have read there is a possibility of incontinence.  

Me experience of the NHS has been very positive.

 

If any of you reading this have an ever reducing flow rate don't wait (like I did) seek medical advice. Retention was the worst experience I've had. 

User
Posted 21 Apr 2020 at 11:52

Hi Gremlin

I'm in a similar situation. Had RARP early 2017 and flow started to deteriorate a while after. I had an appointment for a dilation pre op check next week but it's cancelled due to C19. My flow is down to 3ml max but diminishes to a dribble after about half way through, then I have to push and squirt. It seems to take ages to pee complety. I fear going into retention as well. When I eventually get the procedure it will be rigid cystoscopy under GA and I will definitely insist that it will be stretching only and no incision. I also suspect surgical clip migration could be the cause. More info on recent post on this thread below just for info.

https://community.prostatecanceruk.org/posts/t15955-RARP-Good-News

 

Good luck

Cheers
Bill

 

Edited by member 21 Apr 2020 at 11:53  | Reason: Make link work

User
Posted 02 Jul 2021 at 15:51

My oh has had to have scar tissue removed several times now since his op 2.5 year ago.  He self catheterises a few times a day in order to slow down the build up of scar tissue again and he knows that if he starts struggling to get the catheter in, then the scar tissue is building up again.  His ops seem to be averaging twice a year which is very depressing for him especially if he has to come out with a hard catheter inserted which has to stay in for about 4 weeks.  Has anyone had this problem solved?

 

User
Posted 02 Jul 2021 at 19:37

I have replied on your own post.

Thanks Chris

Edited by member 02 Jul 2021 at 19:54  | Reason: Not specified

 
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