Urethral stricture and self catheterisation

Hi Sue,

This is quite complicated and I can't offer any direct advice.

I would suggest you join us at The FOPS support group on Wednesday - I just posted the details.

One of our consultant urologists specialises in surgical repair work of prostate cancer treatment side effects, and he is the ideal person to answer this question.

Edited by member 29 Aug 2020 at 14:10  | Reason: Not specified

Thanks very much.  Will look into solifenacin.   He is so desperate he will try anything! 

Sue

Might be worth Joining the Zoom meeting as Andy suggested, We may be lucky and find someone who understands the issues. Although probably too late for me there may be some useful info for your husband. From previous exchanges you know I started off with the same issues as your OH.

You could try the radiology late effects team and push them into doing something. My late effects team were sympathetic but blamed surgery and urology blamed radiology. 

Is he self catheterising to release urine or to help keep the stricture open, if only weekly I suspect the latter ? I did find that the less intermittent self catheterising I did the better my continence was. It is easy to damage the lower sphincter and or urethra when pushing the Catheter in , I felt little or no discomfort when self catheterising. I even had a full dilation with no pain relief and not a great experience but would do it again if required. It is important to be gentle.

Even after incision into the scar tissue I still managed to regain my continence. Is he still doing PFEs , quite a few guys mention that their continence gets worse, then improves when they restart PFEs.

Reconstruction surgery to the Urethra is possible but only a few surgeons are recommended, and an artificial sphincter is also possible provided he doesn't lose too much bladder capacity. 

Retention and incontinence in the same day, I don't think I ever had that experience , I did get retention 12 hours after a dilatation mainly because the surgeon didn't think a Catheter was required, could have been caused by trauma to the sphincter. A puncture in the Urethra did cause alot of swelling as urine got into the soft tissue.

They perhaps seem unhelpful because they don't understand the problem. Pelvic radiation damage is not that common and I found getting the right help almost impossible. I think I mentioned it before the only treatment that came up was hyperbaric oxygen treatment but I think mine was too little too late.

Hopefully for your OH the radiation damage is not too severe. I was passing some large blood clots and string like blood clots also funnel shaped skin like debris. My bladder capacity reduced due to the damage, difficult to measure with incontinence but do you know what his capacity is.

If you need the names of the consultants I mentioned before I will PM them again.

My situation now is, a Catheter for life, my surgeon is reluctant to remove the bladder and form a conduit from the bowel due to possible RT damage to tissue. He said if he were to do it he would need my Prostate surgeon and they will have to have three Weetabix for breakfast. I can't hold enough urine to fill a sample bottle.

Any more questions ask away, see you at the Zoom meeting.

Thanks Chris

Hi Sue

I've had a similar experience to your partner.

Prostate removed in 2018, then radiotherapy in 2015 because PSA had moved up to 0.3-this I think was "over treatment". As a result suffered Radiation Proctitus ( passing blood with motions) however after 2 years plus this has almost healed itself. Also had radiation Cystitus resulting in much lose of blood from the bladder, one episode caused blockage which resulted in A  & E visit and 36 hours in hospital! Next a rigid cystoscopy to try and seal the weak points in the bladder, this, quite frankly, was useless and caused incontinence. My incontinence is not severe but was most certainly caused by the Cystoscopy. I would think very carefully about this procedure, and would add that not enough information is given by health officials about the side effects.

After the Cystoscopy I continued to have episodes of passing blood; to treat this I was offered a treatment of CYSTISTAT, it was simply "would you like to try it"  Since the treatment I have had only on episode of passing blood. Cystistat treatment consists of the installation into the bladder of 50ml of clear liquid through a narrow catheter, it takes less than 10 minutes and is applied by a urology nurse--it was suggested that you can do it yourself!  The course of treatment was 6 weekly treatments, followed by monthly treatments, about 9 which took it through about one year. The treatment stopped about 9 months age and has been successful.

I understand this treatment is not expensive, however some urology departments do not use it as they say its benefits are not proven. I've been treated at Bristol Southmead hospital where the professionals appear to be more open about new procedures. My assessment of this treatment is that it probably does not effect a permanent cure, but after the initial course a regular top up would keep the problem under control. If I get a recurrence of the problem I will seek to go back on the product. 

I think you emailed about a week ago and the system did not let me send a private response--I hope this helps

 .

PS How’s your incontinence now?  He had the last cystoscopy on 20th July with a catheter in for 9 days so maybe he’s still healing and it will improve.  Who flippin knows! 

OH has just been to see the consultant who removed his prostate privately and he has put him on solefenacin.   Hopefully not too many side effects.  He’s been told not to self catheterise as he hasn’t got a structure (despite being told he had!).  He is also having another MRI.  At least now something may be moving forwards.

He had a non detectable PSA result today which is good news! 

Thanks Chris

Did the solefinacin  work?  I know there are quite a few side effects and some people have to come off it.  Really hoping it starts kicking in soon but not holding our breath!