my urethrotomy experience, good and bad parts

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hello, i am a 22 year old male, underwent a dilation and urethrotomy yesterday morning at york hospital, thought i'd put my experience on here for others incase you are scouring the internet for info haha. i arrived at the hospital at 7:15 am, was wheeled into the theatre and put to sleep at about 11:30am, woke up about 1-1:30pm was discharged at 8:10 pm.

i think i have had a stricture since birth or from before my earliest memory as i have as far as i can remember, always had a less than average stream which got much worse back in august 2013 and even worse a couple months ago, was down to an average of 1.8ml a second, with many problems being made because of the stricture, such as straining, incontinence, high post-void residual, urine pooling = infections, backflow to kidneys, and frequency and urgency, etc etc

but now, wow, i have never experienced such a strong stream since after the procedure. must be like 25-30ml a second now.

i had a short but severe bulbar stricture apparently, i woke up about 2 hours after being put to sleep, was given oxygen through a mask by a nurse who checked under the blankets and was a bit queezy and quickly covered me over, which made me want to see, but i had no strength as i'd just woken up, i checked later when in the other recovery room only to find the cotten disposable underwear with the pad in pretty much soaked in blood, my entire pubic area with dried blood staining ( took about 20 baby wipes to clean it all off after i was able to sit up ), and my 1st, 2nd and 3rd urinations after being transferred to the recovery room were far more blood than urine, like enough blood in them for it to look like it was just blood and no urine, and the following 5 urinations were still at least half blood, i was in the recovery room for 7 hours as they were short staffed and couldnt get round to discharging people fast enough i think.

i felt ok from the anaesthesia and the valium sedative i asked for pre op at about 3pm, but then for a couple hours i experienced what iv very recently learnt to be called hypovolemic shock, i must of lost around 800-1000ml of blood in the recovery room through what had soaked into the disposable cotten padded underwear and blanket and what i had peed out, i have no idea how much i bled during the op but im guessing alot, but when i tried telling a nurse about the sheer blood loss and that i had gone back to feeling lightheaded, faint, breathless, agitated and stressed, pale skin in the mirror, weak, and my heart was pounding in my chest and had almost doubled in rate, i think they thought i was exaggerating and just said " the bleeding is bound to happen from the op and you're still feeling the anaesthesia"

there are 4 stages of hypovolemic shock, and from what i noticed i matched stage 2 100% and stage 3 about 40%. average male adult has about 5.2 litres of blood, http://www.ambulancetechnicianstudy.co.uk/shock.html#.U3lB6_ldWI8

i do have something called haemophilia in which i bleed more than others, although there are different types and mine isnt the bad one that needs regulating with injections, sometimes i hardly bleed at all, my last blood test a few months ago looked like oil in the needle's vial haha

i rested and kept breathing deeply and managed to come around a bit better, although even now i do anything involving more than a slow walk and my heart is pounding and i feel breathless and a bit dizzy.

the assisstant surgeon who i am still not sure as to whether he himself did the cutting or was an assisstant to the urologist i have been seeing for consultations and diagnosis precedures, came to see me very....very breifly after id been in the recovery room about 5 hours, he said that they had to dilate the opening, did the urethrotomy, had a look into bladder, then sort of scurried away before i could ask any questions, the original consultant urologist who has been dealing with me i didnt see after the morning consultation before the op where he explained it all to me to make sure i was still up for the procedure.

the nursing staff in the morning in ward 27 at york hospital were all very nice and kind, even sloppy, as i was very anxious and nervous. but i can't help but feel as though the staff in the afternoon and eavning in a different section of the hospital were just wanting to get me out the door asap and wern't as bothered about my complaints of blood loss and appropriate signs, i know they were understaffed and behind scheduale but still, someone who has haemophilia (a bleeding condition) complaining of blood loss....surely that should ring alarm bells. but basicly they discharged me as soon as i could walk on my own, i was very happy with the morning staff, but the afternoon / eavning staff made me wonder on work ethics. i am still losing about 10ml of blood after every urination but its bound to bleed still, hasnt had time to heal yet, not sure if the newfound force keeps washing away progress though.

normally after this procedure people get a catheter to wear for 1-7 days to hold the cut open and let it heal around the catheter, and also to stop infection from the urine, i never got a catheter, i have been peeing straight through the cut for the last 30 or so hours, pain is slowly going away, had to buy some painkillers and stool softeners from a local chemist as i didnt get given anything from the hospital. the consultant said he didn't like putting catheters in as they can be painful and cause more damage, since this morning iv had no pain during urination, but a 5 second delay after finishing and it was excruciating for about 20 seconds in the opening because of the dilation needed to make it possible to get the scope in. it brought tears to my eyes, and i am quite a pain tolerant person, once broke a finger and didn't realise until i saw it directly.

to be honest id of prefferred a catheter, although the consultant said they usually keep people in overnight with one in then take it out in the morning, i think with them being so busy they couldn't afford to do so, im not sure.

i was told by the assistant surgeon pre-op that i would have to self dilate to help prevent the stricture coming back, but as i was being discharged i asked about it, and she said there was nothing in the notes about it and that because of that, i didn't need to, i was happy i didn't have to but i'd rather of taken the necessary steps to help prevent recurrence.

another thing was i wasn't told of any activity restrictions such as sports and other activities, bed rest time, etc etc, iv been walking around to try keep myself up and about but i read that people are normally bed bound for 1-2 days

i also had a large area of no sensation in my penis afterwards too for about 15 hours, that has gone away now thankfully, big releif haha

overall, weighing up the good parts and bad parts, i think it was worthwhile, i am dissapointed from the lack of aftercare and communication post-op so i may go private in the future, but hey, a £2000-£3000 procedure for free, can't be too disgruntled, and i know that the problem is gone for at least a while, recurrance rates are about 50-80% after a year, but short bulbar strictures like mine are usually cured from urethrotomy, i hope so, i don't want to be having to suffer the next step up: urethroplasty.

if you are due to have a urethrotomy, im sorry if iv scared you, i think it was worthwhile, i am glad i had it done smile. will be able to do so much more (once iv fully recovered and healed ) now without having to worry

sorry for wall of text

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  • Posted

    update: ( 5 days post-op ) i got a full report from the urologist via e-mail. the procedure only took 20 minutes, and there wasn't much bleeding during the procedure, the post-void bleeding has mostly gone, just a few drops now. not noticed any signs of sepsis, been having to drink 3litres of fluids a day to stop the urine being bad smelling and yellow, some discomfort still when peeing, more pain when i haven't drunk enough.

    starting to feel better from the blood loss, been getting alot more heart palpitations and stabbing pains in mid torso when doing more than a slow walk rolleyes.

    still glad i had it done. just wish id of gotten the problem seen to years ago and not of had to suffer. so anyone who has pee problems or similar things, just get it done :D

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  • Posted

    Update: 40 days post op. 

    Been keeping a log and calculating flow rates, average flow rate for last 3 weeks been around 22ml a second, the flow  within the first 10 days post op I'd guess we're over 35ml a second, but with the incised area healing it's dropped to the lower-mid 20's, still a vast improvement from the average 3ml a second before the op, can empty bladder almost completely if not completely, before op I could only produce about 180ml in a minute when absolutely bursting, now is about 430 average.

    Majority of side problems subsided within few weeks after. 

    The blood loss after effects stated before subsided from regeneration about 7 days after.

    All in all I agree with the urologist that it was well worth doing as the first treatment step.

    Anyone faced with a urethrotomy and wondering whether to go through with it, it's well worth if it is a viable option presented.

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  • Posted

    I had a keyhole one done in a day no problems maybe because female.Only problem is hard to tell when have infection as nolonger the awful pain of cystitus  . Need pads more but used to them now.
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  • Posted

    Urethrotomy was a failure, lasted 4 months. stricture slowly came back with a vengeance, Thursday 11th September ( 4 days ago) it reached the tipping point where I couldn't pee at all and had to be taken into hospital for a catheter. I have made a full report on my post of "due to have urethroplasty, info welcome" 

    But yeah, I need to have a urethroplasty to fix it now, not sure when it will be but I hope soon, the dam indwelling catheter is driving me mad.

    Will update other post when I can.

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  • Posted

    Not having urethroplasty, having repeat urethrotomy within  a month or so, I entered a trial called the OPEN trial, where they are recruiting 500 men with recurrent bulbar strictures, and randomising 250 into repeat urethrotomy, and 250 into urethroplasty, to see which is clinically and cost effective. I have been randomised into repeat urethrotomy, although this time I will probably have to undergo intermittent self dilation, as it keeps the stricture at bay for longer than leaving it be, I found on a site where a urology team didnt trial where a third of their people did self dilation after urethrotomy and the rest didn't, the average recurral time for the ones that didn't do any self dilation was around 170 days, the ones that did do self dilation had an average recurral delay of over 700 days. So it shows it works, as unpleasant as it may seem, it seems it's worth it. 

    Will just be glad to get rid of the suprapubic catheter.

    Will update post op.

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  • Posted

    ollie- I've had a very similar case as yours but my stricture was pretty severe. I now also have a deep stricture near the prostate, presumably caused by previous procedures. 

    I had my stricture cut around 6months ago, I had a catheter for 7 days and everything went black. It was a lot more painful and messy than expected (but anyone reading this, don't worry -just keep up with the meds and you'll be fine!).

    Following the catheter removal I was told to dilate daily and then reduce it to once a week. The dilators they provide are SUPERB, fully sterile and really very easy to use.

    the first few weeks are incredibly painful to dilate as the wounds were still so raw, I would take codeine prior to doing it. The drop out rate is apparently extremely high and I can see why.

    after probably 4weeks the stricture had returned so tight that it was almost impossible to get the dilator in. However, I persevered and developed a pretty good technique.

    now, 6 months on, I dilate twice a week (one is shallow and the other I go to the bladder to make sure that I've stretched the lesser, deeper stricture).

    You develop your own technique. I find it takes probably 5mins now, is relatively easy, uncomfortable but not really painful. If I don't do twice a week my flow rate drops quickly. At twice a week my flow is in the 20s and I'm VERY pleased.

    my consultant thinks the full plasty would be best, but in my case sucess rates could be as low as 60% so I'm going to keep dilating for a decade or so. There are some patents in place that claim to cure strictures with a topical treatment after cutting, so they may come through at some point.

    in my experience, if I hadn't of started dilating afterwardsmy flow would have stopped by now.

    dilating, as long as I continue should keep my flow rate high for the rest of life (until I stop doing it)

    if you've been in for the cut, insist on self dilation. The kit is all free and incredibly good.

    im thrilled. Please Ollie, ask for it - it will change your life.

    best of luck man

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    • Posted

      Hi, yeah I have already emailed the urologist with a results table from a different urology study showing how self dilation average stricture free time amongst 56 patients was 762 days, and amongst 130 or so who didn't ( like me)  had recurrence in an average of 162 days.

      Iv been fully relying on this suprapubic catheter for 3 weeks now, I get a bladder spasm every hour or so maybe more, bladder does its damdest to force both urine and the catheter out but the urethra is fully sealed, mine is in the last part of the curve, about 1cm below, maybe even within the sphincter, i have talked with another person on here who said they have had dozens of urethrotomies because plasty is not an option due to his stricture being within the sphincter, because he'd lose all continence because they'd have to destroy the sphincter, he told me how he started self dilation 9 years ago and has only recently had recurrence a few months ago because he got lazy with the ISD. 

      I'd rather be free of it but I'd rather not risk losing any sexual function should the plasty have side effects, at 23 id rather not lose any function haha. 

      I entered the OPEN trial and was selected for repeat urethrotomy, at the first signs of recurral I'll put myself in for plasty, it is inevitable I suppose.

      You say the self dilation was painful for a while after the op, how long for?

      After my last one they had dilated my opening and whenever I peed it put me in tears, and I'm a guy who broke the end of his finger between two dumbells at the gym and didn't realise until after I finished the set haha, i was like " oh, that's why the collision of the dumbells didn't sound metallic" haha.

      How wide are the single use catheters, and how many do you get each prescription?

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    • Posted

      Maybe to stop the pain of having to self dilate after the op like with you I could ask them to leave the indwelling one in for 2 weeks rather than 1, i had a indwelling normal one for 35 days from September before I got changed to this belly one just over a month ago.
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    • Posted

      When you put it was alot more painful and messy, did you mean the catheter afterwards or the procedure?  And to keep up with the meds, which meds?
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  • Posted

    Hi Ollie,

    My case was quite a lot different. The stricture on the shaft is a good few cm long and then I have a deeper one near the prostate/bladder. My urologist was surprised how tight the shaft one was and I think this probably made the pain afterwards even worse.

    I have quite a high pain threshold (I think all of us do, who have gone through this right?) and have previously driven to the GP with a broken arm, amongst other things.

    After the procedure there was a very large amount of swelling and a lot of blood/discharge. I was in overnight until my catheter bag stopped being red. It was quite messy in terms of blood/discharge for a few days (which I really didn't expect).

    I was given tramadol for a few days and then co-codamol (as well as antibiotics). They gave me the highest dose of tramadol they could, I never asked for it but I’m glad they did this.  I saved some of the post-op tramadol as it made me feel very spaced out, so I cut them down a bit.

    I took retained tramadol just before my catheter was removed and I did the dilation for the first time, all in one session with a very helpful nurse.

    The pain was pretty intense for the first 7 days of dilating and then eased off pretty quickly. I would take co-codamol before dilating and that helped a lot (maximum of 14 days from op and then no meds needed). Still, your pushing through a new wound and it will hurt (face sweats).

    Just push through the first week and know that it gets a LOT easier. There is not really any pain now (a bit sore if I forget to dilate for a week) and it takes me around 5 mins.

    I'll post the dilator size for you. When my stricture started to close again, I thought I wouldn't be able to get the dilator through on some sessions, but I've got a good technique now that's saved me reducing the diameter size I use. If you get similar problems, let me know and I'll describe it.

    The dilators are self-lubed which is great but it makes them very slippery. They come in packs of 30 and they always phone me to ask if I want more. I have a good excess stock, just in case.

    Before the op I had had attempted dilations at another hospital which only worked for a few days. I waited a long time for this op (after being referred to Leeds- which is a great centre for treating these conditions) and to stop my complete closure of the urethra I was using sounding rods to try and break/strech the scar tissue (about 30mins, twice a day). It didn't give me good flow, it would still just drip but at least I could get some urine out. Looking back on it, even with all the precautions I was constantly infected (at the time, I thought it was just irritation from damaging the scar with the rods). The NHS provided, disposable ones are superb and I’ve never had an infection with these, despite entering the bladder once a week.

    Nearly every account of the plasty I’ve read, people are thrilled with the results. I was hesitant due to the 60% success rate in my case so am sticking with ISD, which I’m happy with. I can pee at urinals, drink beer and drive for longer than 20mins- its heaven smile

    If it gets to the treatment stage again, I’ll opt for palsty unless there is a new procedure available by then (I’m optimistic that ISD will last decades).

    I’m 34 but was 33 at the last procedure.

    It would be useful to have a support group for people in our position I reckon. Its a very sensitive area and you can feel completely alone. Its good to know other peoples experiences and that they are in the same boat.

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    • Posted

      do you get dripping problem or bleeding at times? Do u feel pain while sex/ejaculation or while peeing??
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  • Posted

    heres the kit they give me: LoFric-Origo i'm on 5.3mm diameter

    Emis Moderator comment: I have replaced the link with a suggested Google search term rather than a specific website.

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    • Posted

      Iv noticed lo fric have a specific dilator for the strictures called the dila-cath, i think I'll ask for those ones as that's their purpose rather than using something else for a side use. I'll ask for a variety of sizes, wide, medium and slim ones, wide so I can keep the tube wider for longer and the smaller sizes incase it grows back a bit and wide ones can't fit, i could then go down to medium to regain progress.

      The plasty for bulbar strictures is 90% permanent sucess, maybe it's an easier place to operate on due it not being the part that stretches and bends as much hehe, but there is a small chance of damage to the nerves resulting in loss of sensation, damage to erectile tissue and their function, and also reduced penis size due to a segment of the Base being cut out ( always happens but most people regain lost length to some degree),  i talked to one guy whos length was halved for a few months and has remained most but not all after 6 months.

      At 23 now I'd rather not risk losi of function unless absolutely necessary. And with mine being deep and next to / slightly within the sphincter a plasty could make me incontinent.

      You went to leeds for a urethrotomy? You must live in Leeds? Pretty much any hospital can do urethrotomy, i had and will have mine at york where I live, simple quick procedure, took 25 mins from going into room after being put to sleep to done and being sent to recovery room, as you may of seen further up i had quite alot of blood loss afterwards, apparently not much during. But I have haemophilia though, for my suprapubic catheter insertion in had a infusion of novo 7 to reduce the bleeding, and will receive one before next op. 

      I'm going to insist on 2 cuts this time, a 12 and 6 o clock. The standard sasche technique is just 12 o clock, but that leaves half a stricture intact and may be a problem for the self dilation catheters. 

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    • Posted

       nope, I'm miles away from Leeds.

      I started off at Halifax hospital (still a 30min drive) and then due to the severity, I was referred to Leeds for better expertise and with the goal of a full plasty (I’ve had ops at a number of other hospitals in the north in the past). 

      If I had 90% odds, like you, I'd go for the full plasty. Without a doubt.

      There are a number of clinical trials and research projects out there, one using Mitomycin C and another with botox. Both to prevent stricture reoccurrence. They could be promising. I'm tempted to start looking in depth into the research side. Scar tissue sounds relatively innocuous, its amazing the problems it causes- all over the body.

      Dila-cath, if you don’t need the assurance of reaching the bladder, makes sense- a lack of eyes is appealing.

      Do you know what % risk the incontinence is? If its high, I can see why your opting out.

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    • Posted

      No we haven't discussed anything about being eligable for plasty because of its location,  it's just I'm was talking to a man on here who's had a stricture in the same place as me for a long time and he is not eligable for plasty as they would destroy his urinary sphincter due to stricture being far too close to it. If I am eligable and is not too close then i will take it should it come back after this next urethrotmy which it probably will, when i had a 4mm catheter forced through it even if was in acute retention and went to A&E they punched a 4mm hole through it,  when that was taken out in October after SPC was inserted it took 1 week to fully relying seal that 4mm wide hole. I'd probably be doing a dilation every day for a long time 
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    • Posted

      It sounds similar to mine in terms of reoccurrence speed, I would only get a few days from a dilation previously.

      Now I dilate twice a week. And this still requires some pressure. Its hard to get a technique to get enough pressure on, but I have one now.

      If I leave it longer than 4 days, it gets much harder to get the catheter in (and sore for a little while after).

      However, every 3-4days works really well. It sounds like it would for you also. When you get to that stage just remember, DON’T GIVE UP. The pain will subside quickly.

      When it starts to close, if you struggle with technique to get a enough force to get it through- just post on here and I’lll be notified so I can explain my method in detail here.

      I never had SPC, I’ll bet you cant wait to get it out. Also,  I think you’ll be amazed at ISD, if you keep at it.

      ISD is for life but it gets really easy. And you get your life back!

      Just post here if you need support and good luck man!

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    • Posted

      Hello again, I was wondering if you could tell me about that trick of yours during self dilation when you have a bit of trouble, i am due to start the self dilation in just over a week after having this 7.3mm cath taken out after 10 days of it being left in to allow the cut to heal better.

      But i was thinking, the 4mm hole in the stricture re sealed within about 10 days, so if I'm self dilating with say 6mm once a week they said it would be, it could close enough in a week for me to not be able to get the next one through, I could maybe just do it twice a week and say I had too much trouble just doing once a week. But Id like to get at least a years releif this time instead of 3 months.

      Thanks.

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    • Posted

      Hi guys,

      I can't tell you how helpful your conversation has been, although I am now dreading what is to come. I ws hospitalised in February with bloody and difficult urination. I had never had a history of stricture, but they emptied more than two litres of very bloody urine out of my bladder. I suspect that the size 20 catheter they rammed in painfully to do this may have caused the stricture I now have. As my urethra shrank back after I left hospital, a size 14 intermittent self-catheter became too large and painful to insert. Now I can barely force a size 12 in past the sphincter. There was no way they were going to get a size 20 camera in there, which is why I'm scheduled for dilation and possible urethrotomy. Your experiences of this are invaluable, although I am alarmed at the short recurrence period. I would happily try self-dilation now that I have read about your experiences. I'm an outpatient at Edinburgh Western General, supposedly a centre of excellence for urology, but my experience of the incompetence of record-keeping and complete failure of folow-up care after my discharge from hospital are very disappointing. I may hve to wait 5 months even for a diagnosis of my original condition now, never mind whatever treatment they decide on. I'm 57, which may seem old to you guys but I'm certainly not ready to lose function in my penis any more than young Ollie is! Thanks for sharing your thoughts.

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    • Posted

      If someone's in acute urine retention and they cannot gently insert a catheter without forcing they should resort to emergency suprapubic catheterisation via local, or if an anaesthetist is on hand, a light general anaesthetic, when i had my episode in September there was a theatre ready for me for two hours but no one trained in SPC insertion was available, and i got to tipping point and the doctor on call decided to force a 4mm through. I didn't realise this at the time so I thought he needed a telling off for not following protocol, but for some reason urologists have a 8-6 shift and i arrived after they'd gone home, bit silly really, should always have staff trained available.

      Did your flow just stop iinstantaneously and you go into AUT? or did it gradually slow down over time.

      I had my second urethrotomy in January and I've been on ISD since after they took out the 22f / 7.3 mm catheter after two weeks of leaving it in to hold the cut open, was meant to be on twice a week for first 4 weeks then once a week after that, but on 2nd March i was stupid and careless and caused a puncture to my urethra which resulted in re catheterisation for two weeks to let it heal, back on twice a week now until next follow up, had first follow up on 15th April ( two weeks ago) and did a flow rate and turns out my peak flow is better than average, even the urologist said my flow is better than his and he doesn't have a stricture, personally I think it's down to my bladder now being overactive and squeezing far too hard / gaining muscle mass on detrusor muscle, i lived with catheters for 5 months, the suprapubic one was too alien and my bladder and abs kept trying to force it out up to 50 times a day which each time was excruciating, could get these contractions between every 5mins or every 5 hours between 5-50 times a day, which rangeed on pain scale from 5-9 / 10, (10 being so painful you'd pass out) some contractions were so intense I spurted blood from the stoma, and abs assisted so much that I would sometimes throw up or even worse :S, and i think I re tore an old ab tear , i was started on tolterodine tartate anti-spasmodics which worked in greatly reducing the contractions but i had nasty side effects, severe tachycardia and severe breathlessness were two main side effects, resting rate was normally 70-80 bpm, was 112 while on these, and just going up stairs raised it over 170 bpm so I had to stop those, and was put on a variety of other anti-spasmodics / anti cholinergics, all of which didn't work. For pain I was on 60mg/1000mg Co codamol every 4 hours for a while which made it barely bareable, at some points I thought "nah, they must be placebos, there's naff all change in pain" but i was assured they weren't placebos, i started being naughty and purposely overdosing just to bare it, would sometimes take 90/1500, or take 60/1000 every 2-3 hours, even that hardly helped, i eventually took sick leave in December, and after the urethrotomy the catheter was far too tight, the friction was agonising, i couldn't get a wink of sleep because of sleep erections, id wake up in agony, the urethra was uber sore from infections AND friction, like having the worst sunburn ever and then someone giving you a Chinese arm twist haha, i was given tramadol and i WISH they'd of given me it in the first place, worked way better than Co codamol, maybe I'm resistant to Co codamol, they're the same strength but tramadol is more effective and the body absorbs it better, I was on either 50mg, or if pain was bad enough 100mg every 4 hours, i didnt have any side effects like dizziness or drowsiness, my spacial awareness was a bit off as I was bumping into things alot but i am clumsy in general haha.

      The ISD is fine, I was told to go through sphincter into bladder, this is uncomfortable with any disposable catheters which have drainage eyes, the eye scrapes, lofric dila-cath does not have any eyes and is far better, but i have a stock of origo which have eyes, so I do not go through into bladder, my stricture is about 1cm below sphincter, i can feel when iv gone through it, so I leave it at that, i have been doing a flow measuring chart to record my flow rates as a way to show effectiveness of ISD and also a early warning system for recurral signs, i have a 500ml bottle and marked out 100ml increments, and use a stopwatch to time myself, and i measure the morning pee, 1 first urge pee, 1 strong urge, and 1 absolute urgency pee, then divide the ML by the time, to give the average flow rate, add the 4 together then divide by 4 to give daily average, atm daily average yesterday was 26.2 ml/s, after a self dilation it goes up to about 27-30, and if i leave it a week it drops to 22-23ml/s, so it shows you need to be vigilant and keep doing it, but as I say, my flow rate is not the problem anymore, it's the overactive bladder from all the contracting and damage it's been through.

      Also another thing, during the surgery for the SPC insertion, there was almost a big cock up, they were going to use a rigid scope to view the SPC coming through And to fill bladder.... A rigid scope is usually 21f / 7mm, which would have meant opening the stricture up to an equal width of that of a urethrotomy to get it through, no point having a tube inserted through belly if they were just going to re open stricture anyway, I put my foot down and said no to rigid scope when i found out while in the anaesthetic room and said to use the 4mm catheter already inserted to fill bladder and to use ultrasound to guide insertion. There was considerable bleeding I was told and i kept flinching and tensing / reacting, which delayed things, I have a vague memory of intense pain for few seconds and then partially woke up in sheer pain like I'd been stabbed, which i had really, was given shot of morphine and calmed down but as I was only partially awake I could hear the nurse but couldn't respond for a few mins. I think they hadn't given me a strong enough anaesthetic and it was a little awareness. I needed gassing before the anaesthetic in January as I got too worked up from fear of repeat awareness, although urethrotomy can be done with local or spinal anaesthetic, jist a small internal cut.

      Urethroplasty is a much more gruelling procedure and recovery but a far more successful op, no need for ISD and high chance of permanent releif.

      Although I'm trying to design a new scope for treatment of strictures in my spare time, which i think could present a new option, sadly my drawing skills are that of a 8 year old haha.

      Sorry for huge ramble, if you have more questions feel free to ask

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    • Posted

      Thanks for your long reply, full of useful technical information which I will absorb at leisure!

      I think in retrospect the 100% urine retention came on over about a week. A week after the first cystitis-like pain, I began peeing blood, and another week after that I could barely pass anything and it looked like pure blood when I did.

      Whatever the cause, I was unable to pee even immediately after the removal of the 20f foley caytheter, when presumably my urethra was fully dilated - so no stricture to blame at that point. At that point I could easily insert a 14f single-use catheter. But now (as I said) I can hardly get a 12f single-use catheter in; it's a squeeze at the tip, tight throughout the penis, and near impossible at the exterior and interior sphincters.

      So I think that in addition to whatever caused the retention there may now be a further problem caused by the rough insertion of the 20f foley catheter.

      Another thing: when it take the catheter out it is coated in mucus - is that normal?! Could be semen I suppose. Something similar appears at the tip of my penis if I try to force urination without catheter, and it appears towards the end of catheter use, making the urine start to appear cloudy even if it has been flowing clear since the start. Do you have any experience of that?

      Trouble is that in 10 weeks I have had no contact with any of the series of consultants supposedly responsible for me, so it's all speculation. Your posts here are the most information by a long way that I have received about anything that might be going on in my own case! Time to put a rocket under a few people, I think.

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    • Posted

      I dilly dailied alot waiting for things to get going and regret it, i wish I'd of not been so nice and have put my foot down and demanded what was best for me, my first urethrotomy was a none urgent one, took 8 weeks wait, second one I was put on waiting list as a urgent, took a total of 11 weeks, would have been 9 but an hour before due in theatre it was cancelled because they'd forgotten to get a bed for me for recovery.

      It could be your prostate, they tend to enlarge a bit from BPH and can restrict things, not quite sure why blood would come on suddenly and flow only take a week to go from normal to none, some STD'S can cause the entire urethra to become inflamed and irritated and even bleed, and can cause strictures. Gonorrhoea and chlamydia can cause these, they are a large cause of strictures due to damage from inflammation, pelvic trauma is the main cause, put your foot down, demand a flexible cystoscopy, it may hurt if your tube is tight and sore, ask for extra instillagel and even a painkiller beforehand, flexi scope are usually 15f / 5mm, no difficulty usually, i have a tight meatus yet it went in fine when I had mine in march 2014, just say you are very worried about the bleeding and scared of another acute retention episode, it is fatal if not seen to, while my urethra was fully sealed I relied on the SPC, without it id of had a agonising death within 12-16 hours, kidneys fail first then bladder or ureters rupture and urine leaks into abdominal cavity causing widespread infection and sepsis.

      Some people find SPC SPCs fine, even forget they're there, mine was bad though. Takes about 6 weeks to get used to it, i still sleep in a position where I have my leg at the edge of bed so the 1m nightbag tube could reach haha.

      Hassle them, say your worried it could be something sinister like a tumour and they should get their act together.

      Also there is a 18 week referral to treatment policy the NHS abides by, from the date a GP or someone refers you a clock starts, and it stops ticking at the first definitive treatment, they don't abide by this you can DEMAND consultant led private treatment be started free of charge I think, Google the 18 week RTT policy. Hit that ball into their court and They'll be unable to hit it back.

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