due to have a urethroplasty, any experiences / info welcome

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Hello, I am due to have a urethroplasty to fix a failed urethrotomy which I had in may 2014.

The urethrotomy was a 12 o clock incision, no indwelling catheter left behind to hold it open, no self dilation to prevent recurrence, the urologist felt catheters did more harm than good.

I kept a record of my flow rates and made a chart to give to the person at the follow up 12 weeks after, which I had on 31st July, the flow then was an average of 19ml a second, 4 days later it fell straight to 14, then over a week down to 10, then over a couple more weeks down to 7, then a week ago was at 3-4ml a second, then on Thursday afternoon the tipping point came, complete blockage, only 1 droplet every 10 seconds, I rang A local doctors, asked if it was possible to have a catheter fitted there, a doctor rang me back and said I could go visit but they couldn't insert a catheter, and it would of had to of been one which was a couple miles away instead of the one 600m from me as that one had just closed, I said I couldn't make it, she said have a drink and see if a full bladder could provide enough pressure to create a flow, and if I still couldn't go after an hour then to either ring 111, I waited an hour and still couldn't so I rang 111, after 15 minutes of faffing around and no progress in getting help I got to the point I realised it was becoming an emergency, I hung up and rang 999, it took 20 mins for a car to come and access me, i was hiding the pain which was at that point about a 4/10, we went to A n E with no sirens or lights, just followed normal traffic, was taken into a room in A n E and took about 30 mins before a doctor tried to insert a foley but failed as it was a 3.5mm soft rubber one, he went to find a more rigid one, at this point 797ml was scanned in my bladder by a nurse, but after 30 or so mins I was transferred to a ward, where I was questioned and accessed numerous times, they did another scan which was 650, I said "it was 797 an hour ago" they then went away, and at this point pain was 6-7/10 but I was still able to hide it.....just.

After another hour the pain was 9/10 and bladder was bulging out my abdoman and I couldn't hide it anymore, I didn't shout or rage but I was getting contractions every 30ish seconds which were one of, if not the most painful thing iv felt, I can empathise for women in pre child birth.  I was in A n E at 6pm, it was 9pm by the time another doctor inserted a catheter, he struggled so much to get it in but it eventually  broke through the stricture ( the peak of pain, I hulked out and shredded my shirt in agony ( sounds ridiculous I know, I didn't mean to do it) which was kind of funny, then it started draining, the relief felt so good, 1.3 litres I had in my bladder, the doctor was quite surprised. i think the reason it took so long is because I mostly hid my pain and they must've thought I was OK at the time which didn't call for an emergency, it was though, all acute retention is an emergency, if my bladder burst I'd of been as good as dead as I have a bleeding disorder and would of bled out internally in a matter of minutes, and even then , and the urine would of caused bodywide sepsis. Iv realise now I should of just put my manners and niceness aside and of been a shouting moaning patient, id of come across as a prick but I would of been taken more seriously and seen to faster.

I was kept in overnight, and in the morning a urologist and his team came to see me, he said they should of done a suprapubic catheter for multiple reasons, so they didn't damage the stricture and cause more damage and scarring, and also they'd of been able to do the 3 imaging tests that day ( cystoscopy, retrograde urethrogram, voiding cystourethrogram)  I was discharged with this indwelling catheter on Friday afternoon, i'm currently awaiting a district nurse to come check on me at home today to make sure I'm using the catheter ok. I was only given 3 leg bags and 10 single use night bags so I was thinking maybe the op would be within 10 days of Thursday, I highly doubt they'd be able to get me in that early for a procedure which can take 3-8 hours , they mistakingly forgot the bedside hook attachments and / or stand, so iv had to use a makeshift DIY  attachment. 

Currently also awaiting referral letter to either leeds or Sheffield for the operation, but the 3 imaging tests are no doubt about it absolutely necessary before the opso if they try get me straight in for the op I will have to put my foot down, as much as I want this dam tube out, safety first., so I tend to think they will remove this urethral catheter and put a suprapubic one in,  then do the imaging tests, Not sure yet until I getthe letters in the post. 

Sorry for the wall of text, but if anyone who has had a urethroplasty could give me some information it wood be much appreciated. A few questions include:

1) how long did the procedure take

2) how long was the recovery, and how long were you bedbound

3) what aftercare did you get

4) how long did you have to keep a catheter in after the op.

And any other useful information thanks.

Thanks for reading

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12 Replies

  • Posted

    1) how long did the procedure take

    about 4 hours taking 5cm grapht from cheek

    2) how long was the recovery, and how long were you bedbound

    Was not Bed bound but did prefer to say on my back for some time. recovery from feb this year id say after two weeks you see a huge difference but to be honest a good three months and still now not 100% but wow cant complain smile 

    3) what aftercare did you get

    nurse pop round every few days to check

    4) how long did you have to keep a catheter in after the op.

    4 weeks for the catheter but for me the healing was slow so it was more like 11 weeks. but to be honest when u have gone through complete blockage cathetars are a bit of a holiday. 

    the night bags u said u never got a stand, i thought the same but found out for home use the stands are no longer used , I just left mine on the floor , was no problem. 

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    • Posted

      Hi, thanks for reply,  was yours a success? Any side effects?  

      I need to have a suprapubic catheter put in then left for 10-12 weeks for the stricture to settle and stop contracting in order to get the best evaluation, with the doctor on Thursday 11th breaking through the stricture with the normal catheter, has made it all unstable, and tests with the dye would yield false / inaccurate results, plus it be inflamed and if they cut it out they'd of cut too much out.

      the info sheet the hospital gave me explains a few possible side effects. But iv been  on other medical sites, and some say risks include erectile dysfunction, minor Penis shortening, loss of sensation, loss of ability to ejaculate, and curving of penis, and of course, failure of the op needing the same procedure again.

      Living with this urethral catheter is getting easier, sleep erections are painful and wake me up, I can resist most conscious ones haha, haven't had any more than 3-4 hours sleep each night since. 

      Also ( you don't have to answer this one) did you ever ejaculate with a catheter in? I have ceased all activity as, erections are uncomfortable, and I don't want to risk ejaculation causing damage/going backwards into bladder and clogging the catheter.

      Did you ever engage in any activity With the catheter in, if yes, was there any repercussions?

      Iv also read from another patient that a person shouldn't have intercourse or anything for another 4 weeks after the catheter has been removed, to allow complete uninterrupted healing.

      Seems like a long time, I hope there is something that can be taken to reduce libido, I have most control over my libido but still.

      Thanks again for the info

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    • Posted

      Hi 

      Mine has been a success smile 

      My operation was on 5cm of my urethera, the graft from my cheek was really no problem at all. 

      sitting was a  pain for some weeks. I did not drive for a few weeks and car jouneys were pure pain rolleyes 

      intoercourse is fine as soon as you feel ready to be honest. would not with catheter in they are not the old style rubber ones and think about it do u want to interfere with the scar whilst healing sad 

      sperm will not clog your catheter but the constant battle with blood clots will so keep hydrated. 

      penis is a lot smaller after the operation but it does start to get to the same size its not permanent "phew" lol but on saying that the pain and discomfort before would have been way worth the shortening ( mine was half the size for a good few week sad bk to about 75% now and still healing so i am not worried at all. ejaculation non existant (for me) but after months of thinking its gone ITS BACK with vengence  smile dont worry its a long healing process prob min a year but the worst bit is the first few months. 

      and the smile you will have when passing water puts all the little side affects to the back of your mind. 

      hope yours goes as good as mine 

      I think iv answered everything .

      My operation was about 4 hours poss more but in my time was a blink of an eye so operation lenghth is neither here or there lol 

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    • Posted

      you already replied before hehe :D, the urologist told me of a study they are doing on at least 500 men who have had stricture recurrence, where they randomise procedure and see results to see which is statisicly better for recurrent strictures, i have thought about it, im not exactly ready to risk the side effects of open surgery, being 22 going on 23 and with a soulmate still to be found, id rather not risk losing any function haha, its been hard enough being cellibate for 18 days now, especially with so many good looking student girls around my area next to the university  haha xD. i would like to be free of the problem too,

      how long ago did you have your urethroplasty? and where? 

      and was it a simple 1 stage / complex 1 stage / 2 stage ? 

      ive been wearing a "short term" catheter for 18 days now and by NHS policy it HAS to be out after 28 days, and im not willing to have another one in the conventional way, im almost demanding a suprapubic as i hear they are more comfortable and easier to deal with long term. this conventional one is driving me mad haha

       

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    • Posted

      AH did I rolleyes I remember starting a reply but my pc crashed so I thought id send one again , cant see it in the feed rolleyes I was 17 when I started problems. 24 years later they gave me what I had been praying for (urethroplasty)  dont hold off to long Best get it over with. but having said that who knows what they can do in 10 years time its changed big time over the years for me. my op was in Febuary this year in Wales. not sure what you mean by the stages but this op is amazing from 100% fail rate with the usual cut and hope for best to 95% success with the urethroplasty. self cathetarisation does more damage long term - I found that first hand. and to be free of that is amazing.  and ye short term ull heal faster for the time being. I get ya on that. id be gutted single at 22 with a good few months of probs and uni talent all around  rolleyes good luck with what you decide. post how it goes. I noticed when I did a search seeking advice, people stopped posting post op. had me thinking were they dead (should i go ahed with this op) but prob just healed so no longer bothered with the subject rolleyes lol 
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  • Posted

    Hi, I have had the same operation twice now. I had it done last year and was sent home from Hospital after 5 days having had the catheter removed. I was shown how to dress my penis but the dressings kept falling off. I was not seen for 6 weeks and when I returned to clinic was told scaring had occured and I would have to have the operation again. I had the operation again in April 2017 and I am now waiting to hear from urology for an appointment because scarring has happened again and it looks like it will have to be done again. It can't be right to send someone home after surgery with no follow up for 6 weeks then told to wait 6 months before I go in again to have my penis stitched back together. And now with the scarring it can't be stitched up because it will be completely blocked again. I wish I had carried on self cathetering and not had this operation. I was sent home with no medical assistance.Is this usual practice? I have been a year now with my penis sliced open down the middle and it looks like it will be months before it can be stitched back together again thats if it ever can.

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    • Posted

      just wrote you a long message davey but it dissappeared . wats going on with you man ? same thing has happened me .. I JUST HAD TO DILATE A NOT TO Narrow stricture about once per month or less . that was 9 months ago . long story. I CERTIANLY wasnt a candidate fir this . the op was near the end of urethra . you ??

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  • Posted

    Not sure what is happening with Davie but I did go through my own urethroplasty this last week. The doctor was able to snip out the stricture and put the ends together, now I have indwelling cath for two weeks. After three days my scrotum is just large and looking bruised - a bit unnerving. I've carried the indwelling cath in the past - my record was 80 days last winter. Hope this is the last time but just wanted to post about my experience.

    I've had this stricture issue for almost 40 years, after scar tissue developed following a catherization during heart surgery - that's a different topic! Urologists have had all kinds of fun trying to clear the stricture - there has been momentary relief but always the recurrence, sometimes months but usually weeks later, and then steady degradation until I go again to a urologist. Don't get me wrong - I often went years between visits and just did not want to deal with the problem. For me it was mostly a nuisance but lately I have been getting infections as well.

    Had not heard about urethroplasty before - maybe not many doctors are trying this type of surgery. But the latest doctor said this is the way to go, and the article refers to the procedure as gold standard, 90% success rate - 10% recurrence?

    So post surgery not really comfortable lying around or sitting or walking - standing is almost the preferred way to go but not even that.

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