my urethrotomy experience, good and bad parts

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?

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. 

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.

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!

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.

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.

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

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.

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.