my urethrotomy experience, good and bad parts

In Scotland (I'm in Edinburgh) the referral target is 12 weeks, not 18. As I write it's nerly eleven weeks since my discharge from hospital with an "urgent" referral for cystoscopy and urodynamics. No sign of either.

I suppose a urethrotomy is a necessary evil, since without it they cannot examine my bladder with a cystoscope. I wonder if I could avoid one by self-dilating. Urethrotomy does seem a lousy procedure if it creates a situation where it has to be repeated every three months. Your experiences of a supra-pubic catheter sound dreadful too, Ollie. I can still squeeze a 12fr single-use catheter in, and apparently I am lucky because I have only had one infection since I started using them. But the thought of having to do so three times a day for another two months (the time they've suggested I may now have to wait for a cystoscopy under general anaesthetic) is grim. Karen, 3 years seems an outrageous time to wait for a urethroplasty, and all these urtethrotomies seem a waste of time if your son has to have a plasty anyway. Is that how it feels to you, or have they helped?

No they havent helped when he has to have them so often. Last one was 6 weeks ago and is still having pain urinating and having to strain to go as well. Having a lot of pain around navel but not sure what from could you tell me if you have had pain around your navel with yours . Having never had this problem l wouldnt know. Thought someone that has could tell me if that is part of it or not?

Hi Karen,

Good question. No, I've not had pain around the navel at all, in fact no pain at all in my urinary system except for cystitis-like pain during the onset of the original crisis of urine retention and during a recent UTI. And a sort of intense want-to-pee-but-can't ache around the sphincter when my bladder is very full.

I can't imagine what your son's navel pain might be (and shouldn't really speculate, not being a urologist!) - but the navel seems too high for it to be a bladder pain. Maybe something in the connection between the kidneys and the bladder?

Thanks Colin. He also has that pain when bladder is full. If he doesnt get to the toilet in a hurry has a lot of accidents and wets himself.

Wish I had the risk of that problem! I can't urinate at all even when full, and don't even feel the urge to! But joking apart, your son has my great sympathy. He's having a rotten time of it, and they really need to find the source of that pain for you.

Having a ct scan Thursday to see if anything shows up on that. If nothing then gastroscopy and maybe colonoscopy to look inside. Have to find out what it is .It is starting to get him down he looks miserable.

if you are almost at the 12 week referral to treatment policy dealine then you should say to them that you are going to invoke the policy and take action where appropriate.

and with the fact you are having to do multiple difficult dilations a day just to stop yourself from going back into acute retention should have them rushing to get you done so that they do not have you turning up at A&E again , or if you werent able to get help you could die, acute retention is fatal if not treated, they shouldnt be faffing around with you so close to such a serious problem.

before my first flexible cystoscopy i was offered a rigid cystoscpy under general anaesthetic as they would possibly be able to sort the suspected problem while i was there and still under but i deteste general anaesthetic and said no, i waited 8 weeks for my flexi one, they do a conveyor belt system of them, when i went for mine i was 4/14 having one that day, obviously they clean the scope each time but that way it saves them time and money, after my accident in march where i punctured the urethra, if i had put my foot down theyd have had to have a look at the damage with a flexi scope to see the damage and if it needed sealing, it should have been done and sorted but i didnt demand what was best for me and i paid a price for it, i was left with another catheter for 2 weeks to let the area heal but i had significant bleeding over the following few days especially when i would have gained an erection ( the blood that would have filled the area leaked through the puncture and came out) which is impossible to control while asleep so i had to try my damndest to stay awake for 3 days until it eased off, i saw a urologist 2 weeks later at the cath removal and said i thought a scope should have been done along with a retrograde urethrogram to check for extravasation and he said if i wanted he could organise one within a few weeks or less, would have just simply added me onto the next conveyor belt scope queue i should think, i declined though as things had settled. although i probably have caused another stricture with the damage i did.

most people with suprapubic ones find them ok and better, i think because mine was a bit of a cock up insertion it caused problems, they did it blindly, couldnt get a scope in to view inside, and didnt use ultrasound, just bloated my bladder up by pumping fluid in through catheter and made a crosshair incision just above pubic bone and ( on a video of one being done that i saw ) will have used whats called a trocar , like a pointed straw, it follows a guidewire which is inserted through a needle first, it pierces the abdoman and bladder wall, they take out the inside of the trocar and then place the catheter through that, then remove the trocar. but as i say mine sounded like a botch job, took like was like 2 hours from going to sleep to waking up, was apparently a light anaesthetic, probably too light at first without paralysis drugs which is probably why i kept flinching and tensing up, then they must have pumped more anaesthetic in.

but as in your case with the troublesome restrictions they would have to do a blind / ultrasound guided one for you too, you can get slightly thinner flexi scopes, no work channel on them, just LED and lens about 4mm thick, or maybe they could insert one through pubic area and check out urethra from the other side, when i had my last urethrotomy they put a flexi scope in through the stoma in my abdoman after taking out pubic catheter in order to do whats called a "cut to the light" urethrotomy, because a guidewire could not be placed due to my stricture being a full seal, the hole was there so i pursuaded / told them to use a flexi scope from that angle as a precationary measure as i was scared of them cutting my urinary sphincter with collateral damage from cutting without a guidewire.

urethrotomy should always be followed with ISD, the numbers speak for themselves, i wish id have been put on it after first urethrotomy in may last year, all of the last several months probably would not have happened if they had put me on it.

if youre current hospital / consultant cannot get you seen to ASAP, change consultant or even travel to another hospital, or just go higher up the ladder, say that you will take action under the RTT policy and demand consultant led private treatment at their funding or if they dont you will take legal action for medical negligence.

im shocked karen that he was quoted 3 years, i was quoted 12-16 weeks for a urethroplasty, it takes a few hours and theres now alot more specialists doing them than there were several years ago, you should also invoke the policy, thats a ridiculous waiting time especially when if they got it done ASAP they would actually save money from not having to do repeat urethrotomies, a urethrotomy costs NHS about £2500-£3000 , a 1 stage anastomotic plasty is about £6000, a 2 stage is £11,000-£12,000, if theyve done several urethrotomies already and are willing to do several more until finally doing plasty then theyre shooting themselves in the foot by costing themselves more in the long run.

 

i arent sure about your sons navel pain, maybe strained an ab muscle possibly, my abs were very sore during all the contractions, from the acute retention episode and the 1000-1500 contractions i had when things were trying to force spc out i have gained insight into what childbirth is like for women haha, im NOT jealous at all. 

colin, have you been checked for STD's? i know it may sound iffy but i think you should, gonorrhea and chlamidya can cause cystitis like pain and inflammation and infections, etc etc, the inflammation can casue tissue damage which can lead to strictures too, a urologist told me of a case hed heard of where a man had a STD and the inflammation was so bad that afterwards it had caused a full urethra stricture, the entire urethra was one big stricture, infections do make you want to pee, because its trying to flush itself out. go to your nearest clinic or GP and have a test done, just to rule it out. dont be embarressed they will deal with them alot. and it will help towards solving your case

best of luck, hope they sort him out soon and its nothing serious. 

he may want sedation to relax him for the colonoscopy, can be quite distressing from nervousness, ask them for something to relax him like a benzodiazepine ( if he is ok to take them ) , or can even be done under a light general anaesthetic although thatd probably take a bit longer to sort as theyd need to get a bigger team including a anaethetist. the gastroscopy should be ok, may wretch , they can give a spray / drink which numbs the throat which would help.  CT scans are fine, just a big polo , iv had a head scan in one and it was fine, im a bit claustrophobic and i was fine, didnt feel confined or restricted .

I don't think STDs are likely to be an option - I'm 57 and happily married! Having said that, overnight erections do still happen on occasion, and your tales of erect bleeding are alarming.

Good to know about teh narrower cam, thanks for that. If there's a 4mm camera option, I'll ask for it - I am already self-catheterising with 4mm catheters. No one mentioned it when they were trying to ram a 7mm one in - but I suspect that it was all a ruse to get me off a waiting list, and they weren't really interested in discussing options with me..

a retrograde urethrogram involves them inserting a small catheter about an inch in, inflating the balloon to create a seal, then as the radiologist instills a fluid which shows up on xray the xray machine takes fast pics, and the fluid shows any restrictions. this is done by a radiologist, they do 1 or 2 a week maybe more, so its not something they aren't used to. might be worth asking about. 

STDs arent restricted to just sex, its not unheard of of them being transmitted other ways, maybe a unproperly cleaned peice of equiptment shared such as a tool in hospital or a gown or towel.

i understand your point so its highly unlikley, its easy to rule out though and they may want to just for the sake of it. UTIs have inflammation and irritation symptoms, i had several while living with caths, nitrofurantion was what i took each time which helped, its an antibiotic which targets UTIs.

overnight erections are normal, i was waking up 30 mins after falling asleep the most time while with the caths, especially while infected, and worse when i had the 22f one after the urethrotomy for 2 weeks, even after taking 50mg tramadol id wake up like 30 mins after falling asleep going " ow ow ow arrghhh" and thinking of things to make it go down haha, theyre completley uncontrollable while asleep and we even get them if we dreaming of something completley none related to arousal.

im not entirely sure on flexi scope widths, there should be a few models of scopes varying in width, they usually use one with a work channel in order to fill the bladder with fluid to have a look around the inside better.

i assume youve read up how urodynamics is done, they were going to do it for me but we found the stricture first and didnt need it then, i may need it in future as i seem to have an overactive bladder now, not sure what urodynamics can acheive or tell us what we already know.

they shouldnt go straight for a rigid one when just having a look. a cystoscopy doesnt stop the RTT clock ticking, its a diagnostic procedure, not a definitive treatment, definitive treatment would be like a urethrotomy or dilation with sounds or filliforms + followers or balloon dilator, an spc insertion also would not stop it ticking, as it just an option to temporary releive the problem and prevent another acute retention episode.

reason i had bleeding was because i was stupid with a self dilation and careless and caused a deep false passage into the bulbar base where the erectile tissue is, i was underestimated and not taken as seriously as i should have been, lost a good 1.5 pints over the main blood loss after the accident and the bleeding over few days, ive experienced heavy blood loss a few times before and hypovolemic shock stage 2/4 before.

i still think you should crack the whip with them, demand whats best for you, you shouldnt have to delay treatments and be faffed about for etiquettes sake. i was Mr nice patient and my treatments got delayed, cancelled ( first time i went in for urethrotomy on jan 5th it got cancelled 2 hours before due in theatre because theyd forgotten to get a bed for me after i said id need one while at the pre-op because of how i lost enough blood post-op after first urethrotomy to send me into hypovolemic shock ( i have moderate factor 7 haemophilia ) and i had already waited 9 weeks as an "urgent" and they said it would take a further 4 weeks to get back in, when i was quoted 3 weeks in early november PLUS i entered the OPEN trial for them. and in may 2014 id waited 8 weeks as a none urgent, i put my foot down and said " how the hell does a urgent op take 13 weeks when the same procedure as none urgent took 8 weeks" i was losing money and in agony so i said " i want it within the week or i will have to put a claim and complaint in as it is unnacceptable" and they reduced it to 2 weeks extra rather than 4. i think i slightly alienated the urologist, i did say it wouldnt be against him, but he was a bit less friendly from then, he was ok at the follow up, and has organised another follow up in july as i said about the overactive bladder and i was having stabbing pains which possibly were a kidney stone, but probably muscular, said to drink alot of fluids and if bad enoughpain, take painkillers and if it was a stone hope it passed, as it wasnt debilitating, just quick sharp stabs. plus i have to fill in questionaire every 3 months so they can track my progress for the trial results.

once you get hard on them and get treated faster, youll be like " yeah, i may have p*ssed a few people off, but hey, i got treated faster and these people arent exactly people i deal with often"

to moderator: sorry, i didnt use any proper swear words, feel free to star *** it

post waiting to be moderated because i put pi**ed, as in a way you become when drunk, or past tense of when you had a pee, or if you annoyed

Obviously don't be pain in the neck to people that you don't need to be, i'm always very grateful and nice with nurses and doctors who do right by me, it's just even when i was being messed around i still behaved nicely, but doing so caused my treatment to take a bit longer, and I'd have suffered longer if i didnt get on their backs about it.

When my op was cancelled because of incompetence and was going to be delayed 4 weeks, i was just like "why shouldn't I be prioritised? I should be seen to asap" and said I'd have to claim for loss of wages and extended suffering, was supposed to be a 3 week wait and became 11 weeks after they reduced the extra 4 weeks to 2 weeks, i lost a bit over a thousand in wages anyway, wasnt willing to lose another half thousand over 4 weeks while stuck on statutory sick pay since 4 weeks company sick pay had run out.

Why should you suffer physically, mentally and emotionally because they can't get their act together?

As I say you could change consultant, put in a official complaint about standards of practice and patient welfare. Doesn't matter how high they are, there's someone higher who if you can get your point across to would hopefully get it sorted. My complaint got through to the hospital administrator after emailing the patient advice liason service.

I have no recollection of putting anything swear like or rude or anything in that post, maybe auto (in) correct changed a word.

It's definitely time to crack the whip and demand some answers, but I can't even find out who my consultant is. Everyone I speak to passes me on to someone else. Edinburgh's Western General is supposed to be a centre of excellence for urology; but it's an adminstrative vortex of chaos!

id personally put a formal complaint into the head of administration, or as high as you can, maybe say that their supposed "centre of urology excellence" is a false claim as the urologists cant even diagnose you and are playing pass the parcel with you and none want to peel anything off. and are disgusted at the lack of attention to patient welfare and how they are expecting you to survive in a struggle and wait a clearly false "urgent" time for even a diagnosis, a flexible cystoscopy procedure itself takes 5 - 10 mins.

 apparently these posts are 5 days old, i posted that last one only several hours ago,

Easy to be wise after the event, but I don't know why they didn't do a cystoscopy immediately after removing the 20fr foley catheter in hospital, when my urethra was still wide enough to accept a 20fr cystoscope! Now, although the cystoscopy might only take 10 minutes, the dilation and/or urethrotomy required to make it possible will take and cost a lot more.

I've been checking up on waiting times in Scotland. The RTT is 18 weeks, but "access to treatment" has to be within 12 weeks. And diagnosis must be completed within 6 weeks. Apart from the RTT I don't know if these figures are the same in England, Wales and Ireland.

I'm now at the end of week 11 since discharge from hospital, week 12 since referral to the hospital. All that's happened has been a diagnostic cystoscopy appointment at which no cystoscopy was performed, at the end of week 8. Whether this counts as access to treatment is matter of doubt. Presumably the hospital would argue that it does, evedn though I warned them two weeks in advance that a cystoscopy would be difficult if not impossible now that I could barely get a 12fr catheter in.

This morning I am gearing myself up for a day of phone calls to try to get to the bottom of things, or at least find someone who is responsible for my care. I am not optimistic! Thank goodness that unlike you, Ollie, I am unwaged and therefore not losing thousands of pounds while nothing happens. I'm an author. But I am certainly distracted from my work while this drags on.

I suppose my intermittent self-catheterisation, three times a day, is doing two jobs. It is enabling me to urinate while I still have 100% urine retention; and it is helping to keep my urethra dilated, although only to 4mm. What diameter are your LoFrics?

cystoscopy isnt treatment, simply a means to find out HOW to treat you.

the RTT clock only stops ticking when you receive the first definitive treatment, definitive meaning they do something to FIX the problem for you, not sure whether it has to be successful or not though, but a failed operation should call for (real) urgent solutions and priorty care within days, not months.

if you have made alot of money off your writings you may prefer to go private for the treatment, personally id say to hospital "you have 6 weeks left to diagnose and treat me before the 18 week RTT clock expires, should this clock expire i shall invoke the policies behind it and demand consultant led private treatment at (their) expense, and am dissappointed by the lack of concern as (you are) barely able to urinate and on the verge of more acute retention episodes and dread needing to be rushed to A&E for emergency catheterisation again"

Yes, they've already blown it on the diagnosis and start-of-treatment timetables. Big breakthrough today has been actually speaking to the secretary of the man who may be my consultant - alhtough she seemed less than impressed with the idea, or with my request to have an appointment with him. She didn't acknowledge my leter to him at all. There's waiting list even to see him, apparently! She has emailed him and he will get back to me in the next day or so. No rush then.

Sadly I have not made my fortune as a writer! Maybe I'll make it writing a book about all this.

im using Lofric origo 6mm to self dilate, the last few ive done have been once a week and the one yesterday morning was a little resistant but it went through ok, i can feel when it has reached the stricture and gone through, i was told to go into bladder but going through sphincter and prostate is very uncomfortable if i dont use an instillagel or take a painkiller beforehand.

if i was you id probably get re catheterised with a smaller one, a 14f PTFE coated latex one made by rusch that i had was very comfortable, was a little annoying while infected but better than last caths id had, and could also ask for some nitrofurantoin or another antibiotic for UTI's as a precautionary measure incase infection arises, so you dont have to realise you got an infection then have to go to GP and do a sample and things then wait.

i think re catheterisation would be an ideal saftey measure, could rely on it in the meantime to pretty much prevent any risk of acute retention, although that way they may then ease off rushing to get you seen, although could still hold them to the 18 week clock.

not sure why they went for a 20f the first time, normally they like to go for one as thin as possible like a 10-14f, sometimes a 16-20f if there is blood to prevent clots blocking it.

secretaries to the consultants are pretty much powerless, all they will do is pass on the message, although if you mentioned the 18 week RTT and the intention to invoke it should the clock expire then that should get the ball rolling again because they wont want to pay for private treatment.

they should be able to just fit you on the end of the list of consultations, when i had one consultation where i went to speak to my urologist, he said he could go through things in more detail after hed finished if i wanted to go back at a certain time, probably the end of his shift.

im sure all NHS hospitals have a patient advise liason service, you could write an email to them expressing your concerns. it should get through to someone whod be able to crack a whip.

I think they went for the larger size because there was a large amount of blood in the bladder, over two litres - it took four days for the clots to clear, and some of them had to be painfully syringed out through the catheter when it got blocked with them. That's a really horrible feeling!

Wheny ou say "re-catheterised", do you mean with a fitted, permanent catheter? I am managing my total urine retention already by emptying my bladder with three single-use catheters a day. Not sure what a fitted one would add to the party.

I'm using 12f Coloplast ready-lubed SpeediCaths, which are a tight fit, increasingly so from the sphincter onwards. I have only had one UTI so far, which antibiotics dealt with swiftly. The surgeon tried to dilate my urethra with a 14f rod three weeks ago and it was too painful to proceed in the time available (I was on a cystoscopy conveyor belt)  - I gave up on 14f catheters nine weeks ago because the pain of inserting them three times a day was, after three weeks, getting worse and worse. No way I'd get a LoFric 6mm dilator in, at least not without working up to it gradually over a few days!

Maybe I should go back to 14f catheters and try to gradually train myself up. One of my questions if I ever get to meet a consultant is, would it be worth me self-dilating ahead of a cystoscopy to avoid the need for a urethrotomy? The more I read about urethrotomy, the more it seems like a really bad idea because of the frequency of recurrence.

ah right, yeah they go for larger sizes to avoid clots. one to wear for the time being until they can get things sorted, in the same way how when i had the accident 8 weeks ago and it was excrusciating to pee, they fitted me with one to wear for 2 weeks to allow healing so the wound healing wouldnt be hampered by being washed away so much, after my urine retention episode in september i wore catheters the whole time until theyd done the urethrotomy and even wore them a bit longer to allow healing. generally they should leave the original one in until the problem is sorted to avoid more retentions, although if you can function fine by doing ISC for now i suppose its not a necessary measure.

rigid cystoscopes are generally 7mm diameter, too wide for a first step dilation, dilation with sounds involves metal rods of increasing diameter, or filliforms and followers, or the more modern option is a balloon dilation which is under vison of a scope. they may want to try use dilators in order to allow the scope up, dilation with sounds would probably be very uncomfortable while awake, were you awake or asleep for when they tried the rigid scope? if you were awake  and not under spinal or regional anaesthetic then you should ask them where they bought their license, as rigid scopes should only be used under general or spinal or regional anaesthetic, flexible ones are ok with instillagel generally but you may need a little more than that as a measure.

I was in for a flexible cystoscopy, but as I had warned them in advance, it was impossible to insert into a urethra which I struggle to get a 12f single-use catheter into! The surgeon made a half-hearted stab at dilation with a 12f and then a 14f rod, with only instillagel for comfort (he could barely get the nozzle of the instillagel syringe past my meatus, never mind the 14f rod). It was a pain I've only felt once before, when they were putting the 3-way foley catheter into me in A&E.

I didn't really get a good look at the scope, as I was more worried about the whole procedure - in my memory it was enormous! The surgeon told me it would now have to be under general anaesthetic with possible urethrotomy, and I was sent packing. The surgeon probably thinks he discussed it all with me, but lying naked on the operating table reeling from the shock of a) being there and b) not getting the procedure I'd come for, I was not clear-headed enough to ask any questions about what a urethrotomy might involve or what other options there might be. There's a time and a place for discussion, and that was not it.

This is probably a stupid question, but why would you use anything other than a flexible scope in a urethra, with all its twists and turns? How's a rigid scope even going to get past the sphincter?

flexible scope is mainly for diagnostics, its work channel cannot accommadate any surgical tools, its just for looking into bladder for scouting purposes and maybe taking a sample with some little pinchers, but thats all they're good for, any actual work requires a rigid scope, plus a flexible one will flex with your body, a rigid one is more stable, ive had 3 rigid scopes in me, all under general anaesthesia, once in 2007 when i was 15 for stone removal, 12 months ago for first urethrotomy, and january for second, a rigid urethrotome which is used for urethrotomy is advanced to a stricture and a small blade comes out the end, they have to tilt the scope so blade presses against 12 Oclock urethra wall, then move the scope backwards to cut, the blade is about the size of a grain of uncooked rice, its the mechanism to extend and retract it which takes up alot of space inside the scope, to get the scope through they place you in lithotomy position, by angling your penis nearly towards your feet it straightens urethra out, and under anaesthesia your muscles will probably relax and your sphincter would be easy to get past, lidocaine gel helps it relax too.

for it to be so painful from them trying to get rods in it must be inflammation pain, for a super tight meatus maybe lichens sclerosis or skin condition? it could still be worth them taking a swab sample to check for bacteria that could be causing inflammation reactions, might be a reaction to something, have you started any meds around the time it started? could be an adverse / very rare side effect, maybe because your body filters the drugs into the urine and you pee it out, could be causing a reaction.

 

Ollie, once again you are an incredibly helpful source of information. Thanks for all this.

Interesting that you mention lichen sclerosis. I was diagnosed with lichen planus many years ago, a subcutaneous skin rash which spreads in red lines through scratching. I wonder if that's related perhaps an answer. My meatus has always been tight, even when I COULD get 14f rods in before all this flared up; now, even though I can get a 12f catheter into my bladder, it has to be forced in past the meatus.

My GP did take a swab sample from my meatus back in early Feb before I got acute, and that was negative as have all my urine samples over the months been. I'm not on any meds except the occasional painkiller or antibiotic, and I don't think I was any new ones at the time. And anyway, the tight meatus was not a new thing. But thanks, it is certainly something I'll take up with my consultant if I ever get to meet him or her.

The only big change in my lifestyle over the months leading up to this problem has been that I took up cycling again seriously. Up to 50 miles some days on roads and paths. There have been medical articles suggesting that cycling can affect the prostate, although I have not had a sense of taking a particular hammering down there when cycling. Something else to take with my consultant if I ever etc etc etc!

Today I'm on the verge of launching a complaint. I've had promises of phone calls from various sources in urology dept now none of which have been made. If I haven't heard by lunchtime ...

Hmmmm heavy cycling, especially on the road bikes with the thin hard seats, can damage the perineum and urethra, all the pressure of your torso pressing your perineum down on the seat can cause problems after a while I've heard, can reduce circulation to pillar and stones I've heard too, blunt trauma to perineum is a cause of stricture growth, have you ever straddled your frame bar?

Good, should get a response out of them soon, it's a shame people have to become a monkey and jump on their backs sometimes, but if it gets things moving along its a necessary act.

For the tight meatus they could either give you a Tapered stretching plug/spigot to use to gently stretch out open a bit more over time, ( or buy one online) or they could do a partial or full meatotomy while doing the other procedure, would also allow them to get tools in without trouble, is a permanent alteration though, when i had my first urethrotomy they had to dilate my meatus to fit the scope in, was extremely sore because he'd overstretched, luckily in January the other urologist didn't have to dilate it.

any progress yet?

Thanks for asking. I had an extraordinary phone call from a consultant's secretary on 7th May saying he could see me for a clinical appointment in late June, but I would have to come off the cystoscopy waiting list he'd just put me on (having already taken me off an earlier cystoscopy waiting list). I said that was not good enough and I would have to take it higher.

She went away to discuss it with her manager, then rang me back and offered me a clinical appointment in six days's time! And keeping me on the waiting list too. Not with that secretary's urologist, but since it'll be the first chance I've had to discuss anything with anyone, who cares. Result.

Then about five minutes later I got a call from our local private hospital asking me if I was okay with the NHS referring me to them to help clear their waiting lists. I presume it's no coincidence that they rang so soon after I had threatened to go higher.

I don't approve of that sort of waste of NHS funds, especially for something which is a basic diagnostic procedure. And I will still only be getting it and any treatment required in late June. But I certainly don't want to wait for this urology department to get its act together any longer.

So now I have five days to get MY act together and know what questions to ask! Your posts here, Ollie and Test, have both been of enormous help in that. Thank you.

HA, down as a "urgent" and told that earliest you could even speak to someone was several weeks? And even then would have to delay a waiting list for a 5 minute procedure as a day case outpatient, Wow, that's bad.

Good thing they changed their mind, did you say that that would mean going well over the 18 week RTT?

Yeah I don't like to waste their funds but they ought to get you seen to asap so that you don't have any more A&E visits which would cost a lot too, preventing an A&E visit would save enough to pay for the cystoscopy and more, plus on one of those conveyor belt systems where a dozen people have a cystoscopy in the same couple hours in with the same urologist and team would only work out a couple hundred per person, to pay for a private cystoscopy for them to set up the room just for you it's like £1400 with bupa, but with a dozen people being done in 1 sitting it works out better for them. An A&E visit and hospitalisation from acute retention and having to keep you in overnight will be over £1000. So it's in their best interest to prevent you going back into retention as there will be added thousands to the overall cost.

Depending on whether you or they or both will want to try another flexible cystoscopy under local or spinal or general anaesthetic, or a rigid cystoscopy under spinal or general,

Some questions you will want to ask could include:

- after the last failed / abandoned try, do you want to try flexible or rigid cystoscopy in order to view inside my bladder?

- If the cystoscopy fails again would you want to try a insertion through the pubic area or maybe a CT / ultrasound scan on bladder?

- if flexible Can I have a strong painkiller and maybe a sedative beforehand to keep it as least uncomfortable as possible as I know it will hurt?

- could you use thinnest model of scope?

- should I / could i take a strong anti inflammatory beforehand to reduce any swelling / inflammation to possibly help the scopes insertion if the problem is inflammation. Maybe very strong ibuprofen for pain and swelling in one.

- if cystoscopy abandoned, how else can we go about diagnosing and solving the problem?

- if scope won't go in straight away, would using filliforms and followers to dilate the urethra help and possibly then allow the scope to then be tried again?

May be worth writing questions down onto a list, it's what I do.

Hope it goes OK, they should be rushing to get you seen to because 1) you're on the verge of more acute retention episodes and needing A&E visits and taking up resources which could be avoided

2) a sudden large amount of blood should ring alarm bells, and they should prioritise you over people who have minor none health threatening issues.

3) the 18 week clock expires in 6 weeks and you'll be allowed to demand consultant led private treatment at their expense if they cannot get you seen to within an acceptable time.

It does look as though I will be passed on to a private facility for treatment, simply in order to have me treated within my RTT.

Because of the delay to getting a diagnostic cystoscopy, and the inability so far to do one under local anaesthetic because of a too-tight meatus/urethra, diagnosis and treatment will now all happen at once under general anaesthetic.

It's not ideal I think to have them both happening together, and with me unconscious throughout. This means I have to ask all my questions about possible procedures, outcomes and alternatives next Wednesday! I've added your suggestions to my growing list of questions for the consultant, now the fourth to whom I have been assigned in the past 12 weeks. (I've only met one, and that was only for the four minutes or so in which he took one look and decided a cystoscopy would be impossible!)

might be worth making sure they have no intention of dropping any fees on your lap if they give you private treatment within the 18 weeks, they could say " well you wanted treatment within the 18 weeks and going private was the only possible way we could satisfy you"  just to cover your back.

when the first urologist examined me he said my meatus was tight, i measured it at 5mm from bottom to top, but the flexible cystoscope went in fine, they will be wanting to use a rigid which is 7mm which will be why they think its impossible now, a flexible one would just need the meatus to be slightly stretched with a tapered stretching spigot, wouldnt be painful as if you already get a 14f catheter in theyd only have to stretch it slightly up to maybe 6mm to allow a flexible scope easy entry, but then all theyd be able to do is try look for a source of the problem, whereas with a rigid scope / rigid urethrotome theyd be able to incise any strictures if any were found, although urethrotomy is generally only good for strictures less than a couple centimeters mostly within the bulbar urethra.

rigid scopes also cannot get a full view of the entire bladder wall, flexible scopes can look back on themselves and inspect the entire wall, although they could just put a flexi one in after making the path clear with the rigid one. they will need to inspect the entire bladder to check for the cause of the large amount of blood you had.

you could have it done under sedation so you're relaxed and have a spinal / regional penile block anaesthetic ( penile block involves a needle in the glans to numb the entire genital)  to not feel anything from waist down, it's the patients choice, you would be awake for it that way, although they prefer it to be under general. have you had a general before? iv had it 6 times , each has their pros and cons.

you've been assigned to 4 urologists? are they working together to try diagnose you or they just passing you around like pass the parcel?

Passed around like a parcel! And they'll get short shrift from me if they try to charge me for any of this.

I don't think I could get a 14f in any more. It became more and more painful over three weeks, when you would expect it to get easier.

I haven't had a general since I was a kid and the dentist used to give us gas when he was pulling our teeth out. I presume it'll be different this time around!

you could blame them passing you round each other and none wanting to take responsibilty for the delay, and being messed around when needing urgent care, them putting targets ahead of patient welfare, or not wanting to deal with you because they knew it was a complex case, doing right to be demanding treatment with the intention of taking things higher if messed around any more, theyll be pulling straws of who has to do it haha, after all sorted id put a review in if i were you.

the fact that its contracting and closing faster than you can keep it open should make them want to get it done asap. 

should you happen to experience acute retention again the protocol is supposed to be to do a suprapubic, don't faff around if you get to the point where you can't get one in, just head straight there.

general anaesthetic has its pros and cons, if you resist it it makes it a bad experience, relax and let it work and it fine, ask for pre op sedative for any nerves, can also have some gas before they put the actual anaesthetic in to make you more relaxed, although when i was given gas to calm me in the theatre room they put it on full blast and held it on my face until i passed out as i was getting worked up because sedative hadn't had time to kick in. temazepam is their standard choice but there are more effective anxiety releiving sedatives such as valium.

january i passed out from the gas given before the actual anaesthetic, i may have still been slightly concoius but i don't remember, october last year my memory cuts out before the GA will have gone in, can have a retrograde deletion effect sometimes where you can forget a few minutes prior to it going in, and may last year when i had 4th GA it went very smoothley, was a nice lady anaethetist who comforted me, they said count to 10, i felt my arm go cold and got a hot flush and prickley heat sensation in my face and went dizzy, took a deep breath, then next thing i know im waking up to find a nurse holding a oxygen mask over my face in recovery asking me how i feel. you'll feel like you got worst hangover ever, they can give you anti sickness meds if you feel sick, and painkillers if in pain, may also feel very weak if they'd used paralytics too, throat may be sore from having a endotracheal tube in.

if my stricture comes back ill either ask for them to do a simple dilation under local or spinal to get it back to a width that i can carry on ISD on a more frequent basis, or if it comes back bad enough opt for the plasty open removal, or maybe if i can finish my design for new stricture treatment scope and get it made be a tester for it haha.

How'd the chat with the urologist go?

It's tonight - 7.25pm! Just refining my list of questions now.

Bit of a late time for a consultation, probably added you onto the end of a queue for that shift. Might be worth taking notes For the answers to each question.

If they're thinking of doing a GA and having a look aswell as trying to sort it, is a bit of a bad idea, they could come across one restriction, go to cut it, then find there's several more or its too long for urethrotomy to be any good, both cystoscopy and retrograde urethrogram should be done to determine the severity of any restrictions, RUG outlines the urethra on a xray image, you'd be able to see where it's open and where it's not. It's a easy procedure and probably for the better. They usually pop a catheter in an inch or so and inflate the balloon a bit, only slightly uncomfortable, then pump in a contrast dye, it'd be a waste of time organising a urethrotomy if you have a restriction more than 3cm, they could do a cystoscopy and dilation under the GA with dilation being a set of sounds or filliforms or balloon dilator, they could also insert a flexi scope in through pubic area, have a look, try send scope down urethra normal way, then leave a catheter in place so you can rely on it in the meantime and also perform a voiding cystourethrogram later on to see how the contrast dye highlights the area when travelling in normal direction.

Hope you get the answers you want and they can get it sorted sooner than later.

May also be worth asking if they think a partial meatotomy would be worthwhile while under the GA to open up meatus, or if gradual stretching would be better, as with a meatus too tight for 14f catheters, a rigid scope has no chance in the current situation without it opening more, a meatotomy would instantly open it, a partial one would probably be better as a full one goes down the frenulum and can affect the look of things too much.

Yes, don't fancy a meatotomy much. I hear in some cases you have to sit down to pee for the rest of your life! And I still think urethrotomy is to be avoided if possible, just because it doesn't solve the problem of scar-tissue strictures. At the moment I think they only want to do the urethrotomy to enable the cystoscopy, so a retrograde urethrogram sounds like a good alternative plan. I would certainly prefer to discuss the finding of the urethrogram or cystoscopy before they charge ahead and operate. (I still think the original problem of urine retention is not the result of a stricture, because even with the urethra dilated wide open by having had a 20f catheter in for a week, I still couldn't pee.)

The fact that my appointment is so late in the evening is not good, I think. He will be itching to get home and certainly won't want to go through the three pages of questions I have! I'll post here tomorrow abotu how I got on. Thanks again for your info, especially this time about RUG.

a full meatotomy which goes down the underside of the glans would probably have that effect, a partial one shouldn't, could just have a few mm's precise cutting to increase the width, but even so the pros of a full one could outweigh the cons, not the end of the world having to sit to pee.

they could use a bullet shaped ended flexi scope, they need to have a look to see what caused all that blood, and to know what exactly they're up against in order to know how to treat it, they may have to dilate the meatus in order to fit things in, can be sore for days afterwards.

im suprised they didn't put another catheter back in after removing first one, did you not attend a trial without catheter appointment? 

hope they had good news for you 

They didn't put another catheter after removing the foley 3-way. What would be the reason for that? But they did do a trial without catheter - inasmuchas they wouldn't discharge me until I had urinated fully three times, which I was quite unable to do even once. That was absolutely the longest day, waiting around in a ward desperately wanting to want to pee and not feeling the slightest urge! In the end they inserted a simple draining catheter and kept me in another night, then the next morning taught me how to use a single-use catheter. (And then called me in six weks later to remove the catheter they had already removed, do a trial without catheter which they had already done, and teach me once again how to use a single-use catheter! I politely pointed outs what waste of time that would all be.)

Yesterday evening I had my first clinical appointment since I was admitted to hospital 14 weeks ago. As far as I could tell there was nothing in my notes apart from my letter of discharge from back then, and a note about the failure to do a cystoscopy under local anaesthetic a few weeks ago because of a narrow meatus and urethra.

My priority last night was not complaint but fact-gahering about my condition and what should happen next.

The consultant was unhurried and listened intently to my concerns. He is not the consultant responsible for my care - the "responsible" consultant is the one who has NOT replied to my letters and calls and NOT relayed my concerns about cystoscopy in advance of the failed cystoscopy. He will be the focus for a formal complaint int he future.

For now, last night's consultant confirmed that a cystoscopy (with rigid scope) and any urethrotomy or partial meatotomy necessary to perform it, are the only things on the agenda now - obvious really, until they have looked inside they can't even diagnose. He was unconvinced by the benefits of self-dilation after a urethrotomy, and emphatic that I should not try to self-dilate ahead of any cystoscopy to ease the entry of the scope.

So all that is inevitable - no other tests (eg RUG) will show the state of the bladder lining, which is likely to have become weak and wrinkled (trabeculated) by being stretched to five times its normal size though that initial urine and blood retention. There is the possibility, he said, of bladder cancer.

While I was with him he dictated a letter to the waiting list people asking them to expedite my cystoscopy, a simple but impressive demonstration that he was actually going to do something to help get things moving for me.

He also prescribed Tamsulosin to see if that would ease my urination, which is still impossible. This, I feel, should have been tried much earlier when it became clear that my inability was not just some post-catheterisiation blip. But it does have several unwelcome side effects, particularly dizziness and erectile/ejaculatory issues. I hope it dos not affect my main pleasure in life, cycling, but I suppose it might. It sounds like an old man's medicine! designed to help with difficult urination because of prostate enlargement.They told me 14 weeks ago that I have a slightly enlarged but benign prostate.

If cancer is a possibility, and recurrence of acute haematuria a possibility, then the projected 20 week wait for a simple diagnostic procedure (target time 6 weeks) is clearly far too long. The consultant who is supposed to be resonsible for my continuing care has, it seems, taken his eye off the ball and forgotten about me despite my reminders.

I left my meeting (a good half hour of genuine conversation with a health care professional, wonderful!) reassured about the need for what is to come, although a bit downcast about the reality of my condition, which had all become a bit unreal in the weeks and months of being overlooked by the hospital. This is real: I may have a minor cancer; I will need some minor surgery;  no one knows what they will find; I may have to self-catheterise for the foreseeable future, perhaps the rest of my life.

I've had two TWOC appointment and yes they're unbelievably boring, i assumed the first one was going to take like an hour but it took more 9 hours, second one I took my Nintendo 3ds with two batteries, used up all charge on both haha.

Generally they're supposed to get you to have 3 pees before letting you go, but if you can't, put another cath in and leave in until ok to take out again, they must have thought getting you to do ISC would be preferable for you ( without knowledge of how difficult it would be for you)

You say you don't get the urge to go sometimes? And find your bladder really full.

You can request to have him take over treating you rather than the other one who's patting around, you don't have to stick with the one your given at first.

Some urologists aren't sure about ISD as there is not much detail on success of it. Although a trial was done several years ago where 55 post urethrotomy people were put on ISD and around 162 were not, in 3-6 years 51/162 none ISD people had recurrence in an average time of 162 days, 5/55 ISD people had recurrence in an average 762 days,

It was 4 months after my first urethrotomy i had full shut off, now 4 months after second i still have a flow better than most men without strictures, my average flow after a dilation is 27 ml/s, it drops down to 23 after a week so it shows its still re growing, i talked with a guy on here who had had over 100 urethrotomies, 3-4 a year since the 1970s when urethrotomy was created, he started ISD 10 years ago and was stricture free for 9 years until he got a bit lazy and left it a few weeks, and it came back too much to continue and needed another urethrotomy. Some urologists think badly of it because it's only keeping it at bay and not actually treating it, but I find it easy, 5 mins a week to maintain my flow, should it come back id probably opt for the plasty but is a intimidating op.

They could do a ultrasound and CT of your bladder to check, but they prefer a direct visual via a scope, rigid scope can't look back on themselves and view the entire bladder but they could just switch to flexi after getting through with a rigid, i hope they can get things done asap for you and that it isn't cancer.

I think that, regardless of any strictures, there is another problem which prevents me urinating. Even immediately after the 20f catheter was removed (and presumably my urethra was still widely dilated) I couldn't urinate. And no, in the normal course of things I never feel the urge to. In exceptional circumstances when I have drunk a lot of tea or coke or beer and the bladder is very full, I get something a bit like an urge. But if I then try to urinate, the urge intensifies into pain. Sometimes a pathetic few drops will come out, sometimes a clot of mucus. And often if I have felt that urge, the next catheter will be difficult to insert past the sphincter.

God knows what is going on down there! It drives you mad speculating with or without the help of Dr Google. I think I am going to try to put it out of my mind for a while now until my cystoscopy appointment comes through, except perhaps for the pleasure of writing a strongly worded letter of complaint to the guy who should have been attending to me.

perhaps there's a signal problem to the sphincter, not telling it to relax and for the detrusor to contract, and signal issues from the bladder nerves which tell you when it's full, the signals all travel through a system to the tailbone then up the spine, if you Google the nerve anatomy you'll see, maybe there's a issue interrupting those signals that they could look into, maybe if a urologist used e-stim to electrically stimulate those areas to see if they function with a impulse it could maybe tell if they're not getting a signal or if they themselves are dysfunctional.

I hope they can get you seen to very soon, they have 4 weeks on the clock left to do a first definitive treatment so you should get it through quite soon.

Any news on progress Such as appointment been made or anything?

I'm on Tamsulosin now, which briefly resulted in me actually beign able to pass a short weak stream of urine without a catheter a few times. That's stopped now, but god knows why it wasn't tried 14 weeks ago. I am unfortunately having one of the common side effects, retrograde ejaculation - the ejaculate goes into the bladder rather than towards the meatus, resulting in dry orgasms. Bad enough that I can't urinate! Now this!

I finally had a reply from the consultant responsible for me to my letter of four weeks ago, saying he will arrange to see me to discuss my management - but not saying when. I know it's a techincal term, but management makes me sound like a branch of Tesco Metro or an industrial dispute. I'm a patient - I need diagnosis and treatment, not management.

The moment when I urinated all by myself was ridiculously exciting! I must be more strained by all this than I realised.

So you don't have to rely on ISC completely for now?

Another talk... They know what they need to do they should be arranging diagnostics and treatments, not more talks. Sounds like they're still trying to pass the parcel, not long until the 18 week RTT clock is expired though. And then you can go to administration / chief / head of hospital and demand private treatment at their expense to make up for all the pratting around.

I'm still reliant on ISC. The urination without catheter wasn't enough to void my bladder by any means, and it has stopped after a day or so.

It seems unlikely they'll hit my RTT at this stage, since they haven't even diagnosed my condition yet 14 weeks after admission. Someone told me yesterday that the possibility of cancer means it should have been on a much shorter scale anyway. I don't think it IS cancer, but that sort of thing should be eliminated pretty urgently, I should have thought.

But things are moving a little - last week's meeting with a consultant, the Tamsulosin, the letter asking for the cystoscopy to be expedited, even the vague offer to meet me to discuss my "management", are all changes in the last eight days. I wonder what effect they will have over the next week or so!

When cancer is suspected they're supposed to get the cause diagnosed and either find or rule out cancer within 3 weeks,

Good that things are moving but sounds like they still going at a snails pace when they should be getting you sorted within the time.

The letters do take a couple days in the post though so hopefully you'll get something through soon.

And now suddenly they have a cancellation and I am slated for my dilation/urethrotomy/cystoscopy in five days' time, pre-admission session in three. This is where it starts to get very real, I suppose. I've never had an op at all, never mind a general anaesthetic.

Good good, finally something to hopefully sort it or at least find out how to sort it.

Ask for a sedative when you get to speak to people before it on the day, they'll give you something to settle nerves and make you sleepy, value generally best for anxiety, they like to give temazepam bit i find it doesn't do much as it's more of a sleep aid than an anti anxiety pill.

When i had my first urethrotomy a year ago now, i took measures to make myself unaware of when the anaesthetic was going in, i had EMLA cream on my hands so I wouldn't feel them putting the cannula in, i kept my eyes closed, and i had ear plugs in ( didn't work, could still hear them so I took them out), you could have maybe some music on, and just lie there relaxing and you may not even notice it go in, usually arm goes cold and tingly then get a hot flush and dizziness then black out, and next thing you know you're waking up in recovery.

It will most Likley be very sore afterwards so make sure to ask for painkillers if need be.

Hopefully they'll succeed and don't have to re organise it again, although if it fails then i think the 18 week clock continues ticking, not sure.

Hope it all went OK, and you're feeling better, any info on results of the procedure?

It went astonishingly well. I remember nothing, not even the onset of anaesthetic, until I was gently woken in recovery. I've felt groggier waking from an afternoon nap! Without exception all the medical personnel were efficient and gentle (at least while I was conscious!).

I was in for a diagnostic rigid cystoscopy. It was explained to me that ideally they would have done a flexible one first so that they knew what to expect. That hadn't been possible because of a urethral stricture, and today as well as looking around they might take samples of any suspicious cells for biopsy, and try to break up any stones they found. A urethrotomy might be necessary to get past the stricture.

In fact they managed just by dilation of my very narrow meatus, although they must torn it in the process because there was a little bleeding. But I was really relieved that there was no cutting!

The success of the operation was tempered by the fact that they found nothing to explain the original urine retention and bleeding in the bladder. So the search goes on. But on the plus side they found nothing - no stones, no cancer.

They reckon my retention began unnoticed many months ago, and only became apparent when my bladder just couldn't take any more. Next step is to get a CT scan of my ureters to look for the source of the blood, but they think it's unlikely, and after that they seem to be running out of ideas. Because my bladder was so stretched, it is quite possible that the muscle will never recover and that I will be using ISC for the rest of my life.

I should add, I have left hosptial with a fitted catheter which will stay in for a week to allow the urethra to recover from the dilation - better that than irritating it three times a day with a single-use catheter.

The management of the leg-bag is so far easy enough. I was anxious overnight about the night bag - had I attached it correctly? would urine flow properly from the leg bag to it? would I disconnect it through restless sleep? I went to bed with snug boxers on thinking that they might help stop too much movement around the various catheter connections, but actually they meant that there was less give at the connections so they were at greater risk of parting; and I took them off in the night.

All well otherwise, although there are always a few drips when emptying or disconnecting, so I've learned to make sure I do that on a smooth flooring and not on carpet!

This first morning back home there is a little blood in my urine, which is a surprise and suggests the bleeding I talked about in my last post was not just at the meatus but also in the bladder. (But it takes very little blood indeed to colour your urine, so I am not worried.)

Unlike most hospitals you hear about these days, the Western General in Edinburgh does good hot wholesome school canteen food!

So they accidentally tore your meatus? I thought they'd of done a partial meatotomy to dilate it properly rather than tear,

So was the meatus the only restriction or was there another stricture along the tube?

Good that they didn't find any cancer, is a releif for you, hopefully with the meatus now open more you'll have a better flow.

Good that the anaesthetic went smoothly, did you have a sedative beforehand? Yeah it can have a retrograde deletion effect, deletes memories minutes prior to the anaesthetic, my 5th one in October my memory cuts out just after finishing a conversation with urologist after I found out they were planning on using a rigid scope to watch the SPC come through... When the reason I needed the SPC was because of the stricture, was a facepalm moment indeed.

Yeah the foods gotten better, i had a birds eye breaded fish and chips last time haha, i usually stuck to sandwiche.

So There was no actual meatotomy or urethrotomy, just dilation (over) and cystoscopy?

All the report says is that I had a meatal dilation, and the doctor said there was no surgery. There's no sign of a tear, and I don't really know where the blood came from. It has stopped now, it seems. From gentle prodding it feels as if the whole length of my urethra is tender from the insertion of the rigid cystoscope - no one area in particular.

As far as I know I still won't have any natural urine flow at all. I didn't before they did the meatal dilation and there's no suggestion that enlarging the meatus will have changed that. The meatus wasn't closed, just narrow: I was still using 12F ISCs for all my urination. Once the fitted catheter is removed next week I expect I will carry on using them, and the doctor, running otu of ideas, agreed that it was possible I might be using them for the rest of my life.

The anaesthetic was as you described: something to relax me, along with oxygen through a mask, then the anaesthetic itself, first I think through a canula and then replacing the oxygen, through a tube down my windpipe. As predicted, I had a mild sore throat from that which has already (second morning after) worn off.

It's nearly two weeks since I started taking Tamsulosin, which is supposed to ease the flow in cases of enlarged prostate. Obviously it's hard to check whether it's working while I have a fitted catheter in. In fact it's not that I have difficulty peeing, I don't get the urge to pee at all. So I'm not sure if Tamsulosin is the right thing to be taking, especially as one of its effects is to REDUCE my urge to pee! The side effect of dry ejaculation was still there last time I checked; but it does seem to be enabling a weak stream of urine when my bladder is very full (eg after a morning of heavy tea-drinking or an evening drinking three pints or more). The bladder is still very large, having been stretched by the original retention when it was holding more than two litres instead of 300-500ml. It may just be that it never gets full enough to want to send me signals to pee! But I think there's more to it than that.

With the fitted catheter in, I AM getting urge-like sensations from time to time. It would be wonderful to think they were actual urges and that when the catheter is removed next week I will pass a trial without catheter. But I think what I am feeling just now may just be discomfort at having the catheter in. After all, I had a fittted catheter for a week back in February, and when that was removed ... nothing, no flow or urge at all. I must say a fitted catheter with a leg bag is a lot less convenient than ISC. With ISC I have gone up to twelve hours without voiding, with little or no discomfort. Having a huge distended bladder certainly helps with that too!

The cystoscopy was purely observational. They said they would take a tissue sample if they saw anything suspicious, but they didn't. So I have no reason to think anything will be different now. I will continue with ISC and the next test will be a CT scan - they say in a couple of weeks, so probably in a month or so.

Sounds to me like the urethral sphincter isn't getting the message to relax, which would cause the ejaculate to go backwards, when i tried once while my stricture had fully sealed the urethra it was very painful and it went backwards, and it would then slowly drain through catheter after a while, so I stopped sexuality activity for the time I had the SPC and stricture was obliterative which was about 14 weeks, so maybe your urethral sphincter which is just below prostate is acting like a stricture, along with a lack of signals from bladder. Do you ever get tingling in any limbs? Or have sciatica?

Yeah it will definatley be sore, rigid scopes have a flat end and no rounded edges, like a straw, i had heavy bleeding after they used one in 2007 to retrieve bladder stones and i think it was that which caused the damage which formed stricture, as until my first urethrotomy i can't remember such a strong flow, but i can't remember into my below 15 years about the flow, it could be a congenital one. But it only caused enough problems a couple years ago to start getting my attention, could have found it almost a year before we did if i didnt chicken out a flexible cystoscopy to check for why there was some blood showing in a dipstick test.

rigid scopes can't look back on themselves though, they can get some which have different angulation at the end, but only flexi scope can get the full 360 degree look.

Have you had a district nurse come out or did they just show you basics at hospital?

I had to acquire a bedside hanging attachment for night bags as hospital didn't supply one, i carried night bag to toilet and disconnected it over toilet to prevent any spillages.

You may get a UTI so it may be ideal to drop a sample off at docs to be tested, cranberry juice has a quality to it which helps wash out urinary system so may be ideal to get some. Also be as clean as you possibly can while making any contact with the area, and don't let the tap touch any dirty surfaces, if you get friction irritation rub some lube or something appropriate that won't cause irritation around it, maybe vaseline.

The sudden urges you feel may probably be bladder spasms, it's a alien object so they try force them out or become irritated, if they become annoying and you can't bear them you could ask for something like solifenacin or mirabegron or tolterodine to ease them.

At least it's only a week you have to live with it, itll blow past fast, the time I spent with them went slowly at the time but afterwards it seemed to have gone fast, only feels like a month ago I had the op, was mid January :P

Hope it all goes well for you

Update! The meatal dilation has held, and self-catheterising is going smoothly. I did have a string of UTIs in the wake of the cystoscopy, including a very painful and awkward bout of orchitis (when one testicle swelled up to the size of an orange).

The tamsulosin was ineffective, and not appropriate to my condition. I took it for a month then gave up.

I had my one and only meeting with my consultant (Mr Alhasso at the Edinburgh Western General) in mid July, more than five months after I was referred to him, and he only met me because my GP demanded to know why he hadn't. At the meeting he didn't know a damn thing about my condition and was surprised to learn that I had total urine retention and had been self-catheterising for five months. That didn't stop him announcing that there was nothing he could do for me, on the basis of one CT scan image which he found after hurriedly looking through my files during the meeting. I didn't even know before that that I had been diagnosed - I have an atonic bladder, ie one which has been stretched out of all shape or use and, he thinks, will never regain its muscles or nerves.

I lodged a formal complaint soon after the meeting, about his incompetent management and communication of my case, which was last Friday upheld in full. But it hasn't changed a thing - I am still waiting for a referral to neurology, which was suggested when Mr Alhasso decided there was nothing urology could do for me. And I am still waiting for urodynamcis tests for which I was referred "urgently" over six months ago.

The delays are not only frustrating. Any tests done on my now, any observations, will be on a urinary system which hasn't been used for over six months. Any muscles which were still there six months ago probably aren't now. Any evidence of what caused the serious in-bladder bleeding which brought all this to a head back in February will have long since healed. My most recent CT scan and ultrasound scan revealed nothing except the distended shape of my bladder. And it's been a long time since I was able to squeeze out any urine without a catheter.

I am feeling thoroughly abandoned by the healthcare system. But at least the self-catheterisation is okay, with no infections for a few weeks now. I am braver about self-catheterising when out of the home, and it has become so routine now that I am beginning to forget to do it, particularly last thing at night. What I hate most is having to start and finish every single day with this act of engineered urination, which  makes me feel so detached from my body. And my GP and my consultant talk about it now as a long-term (ie forever) situation, even though nobody has actually tried anything at all to treat it.