Recurring Bladder Neck Strictures

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Hi, I've had two bladder neck stricture surgeries at two month intervals after open RP and recently a urethral stricture. 

Uro recommends daily dilation for a year using a Cooksmedical dilation balloon catheter. 

Recently had blood/clots in the urine which cleared after up after 3 hours but now I have a lot more irritation getting the catheter past the urethra stricture. 

Uro says any further Urethrostomy would be serious as he has already cut close to the sphincter ...does this also rule out Urethraplasty?

Has anyone found that daily dilation works long term or does the stricture eventually close in. 

I noticed that after waiting 3 days for a new catheter to arrive it was then very difficult to insert it. ...as opposed to daily dilation.

Is there an alternative catheter as this one costs €220

James

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  • Posted

    Hi James,

    I'm not sure how relevant my experience is, but I use daily ISC (size Fr12) - usually four times a day, because I am otherwise unable to pee. Different problem from yours, I realise, but that frequency of catheterisation certainly keeps the urethra open.

    When I developed total urine retention I was rushed into emergency, where they very VERY roughly inserted a Fr21 Foley catheter - that necessary roughness tore the tip and resulted over time (a couple of weeks) in a meatal stricture, which made it progressively harder and more painful to insert my ISCs. I then underwent a dilation, and - touch wood, if you'll pardon the expression - I have had no trouble in ISC-ing since, which I suppose effectively acts as daily dilation.

    The ISCs are certainly cheaper than 220 - I live in Scotland and here we get free prescriptions! I suppose your balloon catheters are necessary because your stricture is in the bladder neck: I have no experience of those except for a couple of inpatient episodes.

    Your recent blood clot and sphincter irritation sound like a bladder infection to me (not that I know) - I've had similar episodes since this all kicked off a year ago, and they always clear up quickly with antibiotics from my GP.

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    • Posted

      Hi Colin, thank you for your reply. 

      Wow 4 times a day ..that's a lot. I find this catheter feels sharp on the edges because it's flat rather than round when it's undilated. After insertion distilled water is injected into the balloon to dilate it. Mine is only 9fr ..only comes in 7 or 9fr.

      I also went in with urinary retention but by the time they were finished poking around with Catheteters & Cystoscopy I was completely blocked. Uro inserted a pubic catheter on a trolley in the hallway at midnight ..not a pleasant experience as it was inserted beside my open RP incision of 2 months earlier.

      I also wondered how I got a urethra stricture aswell as the bladder neck stricture ..I think it was also due to the way they inserted the catheter. I think an opportunity to do a catheter demo on the Uro would be a good idea...just to give him more enlightenment:-)

      Yes this Balloon dilation catheter is mainly for the bladder neck stricture.

      I was wondering about bladder infection ...I'm waiting on the urinary test results from the lab.

      Do you know how much Urethraplasty costs in the UK.

      Regards

      James

       

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    • Posted

      Do you have to insert the balloon catheter yourself? I've only had one inserted by a nurse, on two occasions when in hospital. I think inserting it yourself, under supervision if necessary, would be less likely to cause damage. I'm quite sure my meatal stricture was caused by the painful way they did it when I was first admitted! And it sounds as if your urethral stricture may also be the result of that. Thank god, I've not needed a suprapubic catheter yet.

      I don't criticise the doctors for the painful insertion - by the time I got sent to emergency, I was carrying around 2.5 litres of blood and urine in a bladder designed for 750ml, and was probably about to burst. They had to get a drain in urgently!

      I'm about to celebrate, if that's the right word, one year of not being able to pee at all. After 2 MRI scans, a CT scan, a cystoscopy and umpteen ultrasound scans they still don't know why, and have run out of tests. So that's that! Four times a day is not so bad, I can't remember now how often I used to pee, and the alternative now is my bladder filling up until it explodes, which would be fatal. And at least I'm not incontinent - things could be worse.

      I don't know about the cost of urethraplasty; free on the NHS I suppose. I have had a look at our local private hospital rates: urethraplasty not listed, but a cystoscopy costs about £1600, and a rhinoplasty (for the nose) £3750. Abdominoplasty, whatever that is, is £5650.

      I hope you get your infection (if that's what it is) diagnosed and treated soon! Infections come with the territory unfortunately - I've had half a dozen this year, which I gather is fewer than average for someone having to self-catheterise this often. I'm very diligent before each time about washing my hands, and wiping my penis with antibacterial or antiseptic wipes. Better to spend a bit more time on all that than keep popping antibiotics!

      Best wishes,

      Colin

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    • Posted

      Hi Colin, yes, I insert the balloon catheter myself. It's not much different than a regular catheter except that when it is undilated the balloon is flat rather than round. If you have a look at cookmedical website and search for balloon dilation catheter you will get a better idea. I guess the idea is it's easier to get in when it's flat.

      I only had the supra pubic catheter in for a week

      Got the lab results back ..shows an infection ..which probably explains the difficulty lately with the dilation and why I was having lower back pain recently. I thought I was doing a good job on the hygiene but I guess not. I read somewhere about one catheter that comes with a little funnel piece that fits into the tip of the penis ..the catheter slides in true it preventing bacteria being pushed true the urethra.

      Urethraplasty in America is approx. $19,000 - $24,000.

      I'm new on the forum how do I retrieve the links that you tried to send.

      Did you receive any maintenance, follow up app with your Uro to keep a check on the stricture.

      Thanks & Regards

      James

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    • Posted

      Oh, I'm sorry they blocked the link. I will try to PM you, but you could try googling Treatment Prices at Spire Edinburgh Hospitals.

      I think the funnel catheters you describe are the ones I use - mine are called Coloplast EasyCath, and come in various sizes. The tube is flexible and comes pre-lubricated except for a short length near the funnel which is where I hold it, greatly reducing the chance of infection from insertion. The only tricky part is lining up the tube with the meatus without guiding it in with your fingers! But once you're in, it slides in pretty easily (unless there is irritation further in from infection). I find I have to push it slightly more firmly just before it enters the bladder, just to get it through the sphincter - I don't know if that's just me and my firmly locked sphincter, or if everyone has that experience. The funnel is attached to the exit end and stops the tube disappearing down the urethra.

      I have had no maintenance following my dilation, no follow-up examination or discussion. But it seems to be holding and not causing any further problems or closing up again. In fact I have had a formal complaint about the slow and neglectful response of my urology consultant upheld in full, although it hasn't made any dfference to his level of activity or got me any closer to an explanation of my condition or a cure for it! The urology department has only just followed up on how I'm getting on with the catheters, a year after I started using them!

      My GP doctor is of the view that they've done all the tests they can, so the cause will remain a msytery and the condition will remain permanent. I'm not sure that I'm satisfied with that; but worrying about it and trying to get answers has dominated my life for a year now, and I need to get on with my life! If they can't find any cause after three ultrasound scans, two MRI scans, a CT scan and cystoscopy, maybe this really is it.

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    • Posted

      Hi Colin,

      The catheter I read about used a small funnel as a separate piece to help prevent infection.

      I have the same issues getting the catheter past the urethra stricture, strangely the bladder neck stricture is not as difficult lately. 

      I have no follow up either other than Psa check every 3 months. I guess the standard of care is a common problem. I was telling one of the Uro's I was having  urinary problems 2 weeks after my Radical Prostactomy ,,he said no it's just healing that's going on ..6 weeks later the outcome  was urethrotomy and similar delay 2nd time around had the same outcome.

      Could previous injury have been the cause for you.

      Thanks & Regards

      James

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    • Posted

      Hi James,

      The longer I spend in the healthcare system, the more I am overwhelmed by the complexity of the human body and the more forgiving I am of doctors, surgeons and consultants who miss something! I actually had to write a book (called Science Is Beautiful) about the body just before I ws taken into hospital with this condition - it was a book of scan images of the internal organs. I had to write the captions and I had to learn very quickly what I was looking at in the photos so that I could explain it to the reader. Amazing systems inside us, keeping everything working and healing it when it stops. Then when I went into hospital it really helped, to be able to understand what was going on.

      It is possible that I injured myself in some way that I wasn't aware of. They said the build up of blood and urine in me must have been going on for months if not years, so it's hard to know when it started or what I was doing at the time! But it's also possible that I simply haven't been going for a pee as often as I should. I do/did have a tendency to put it off if I was in the middle of something or if it would make me late for something - I have an issue about not letting my body let me down or get the better of me - and it could be that I just stretched and stretched my bladder over time without realising it until eventually the muscles got too weak to work any more. Who knows? But it looks like it is never going to get its shape back now.

      What about you? Injury? Some say that cycling can damage the sphincter. Hope you got my PM with the link to prices.

      All the best,

      Colin

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    • Posted

      Hi Colin,

      Yes, it is amazing how it all works.

      I drink 5 or 6 pints of water a day since RP to help keep things working.

      My bladder neck stricture was the result of open Radical Prostatectomy seemingly from either a urine leak, hematoma or undue tension.

      Robotic surgery has less risk of this occuring due to better range of vision while creating the water tight seal.

      Thank you for the link ...l cant find Urethraplasty on the list or maybe I missed it.

      Thanks & Regards

      James

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    • Posted

      No, sorry, urethroplasty isn't on the list, but I thought it might be useful for comparison with similar prices/ops where you are.

      You are wise to drink plenty of fluid. I don't, dspite my best intentions. Not that I can pee at all, but it helps flush out any early infection in the bladder.

      All the best,

      Colin

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    • Posted

      Hopefully a solution will be found for your condition.

      Urinary infection does not help when trying to use a catheter.

      I don't think reusing the same catheter helps prevent infections either ..I was told it's ok to use this balloon dilation catheter long term.

      Yes, it was interesting to see the prices.

      I did see a price elsewhere of £8,000 for Urethraplasty.

      The surgery does seem to cause incontinence issues.

      Someone mentioned about Vito Pansadoro, Rome who does a specific type of bladder neck incision without the need for Urethraplasty.

      Has anyone got information on this procedure.

      Regards

      James

       

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    • Posted

      My urinary infection has cleared with antibiotics.

      The infection was Serratia Marcescens ..which seems to be more common in hospitals? I still have lower back pain 2 weeks after the infection..feels like kidney area. Just wondering what might be the cause of this.

      I still have irritaion inserting the balloon dilation catheter. I'm wondering would the normal stricture dilation catheters without the balloon cause less irritation? The one I use is only a 9Fr which I presume does not allow much room for using different sizes to dilate the strictures ,,is 7Fr the smallest?

      Would retrograde Urethrography give the same stricture information as Cystoscopy 

      James

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    • Posted

      Hi James,

      Glad to hear your infection has cleared up. Without being entirely sure, I do have the feeling that most of my bladder infections recently have followed hospital stays! I don't know about the lower back pain, but a urinary infection could spread back into the kidneys, I suppose, or could have come from the kidneys.

      If you're having irritation inserting the balloon catheter, it might well because it has created the irritation itself by sitting in there for so long.

      I imagine that anything sitting in the urethra longterm would cause irritation. Without lubrication, and without fluids passing down the urethra, it will get dry and rub against the catheter. Certainly my two experiences of fitted balloon catheters, both only for a week, resulted in a very irritated and dry, blistered tip of the penis at the point of entry. Nurses said that was quite common and gave me an anaesthetising gel, but it didn't really help. In fact after the first occasion (a foley 20fr catheter), the irritation caused a stricture to form around the tip. It became incredibly painful to insert my 14fr ISCs and quite difficult even when I moved down to 12fr. They had to dilate under general anaesthetic in order to conduct a cystoscopy, which used a 22fr camera.

      I do think that self-dilation would be gentler on the urethra because a) it doesn't stay in all the time, and b) you can lubricate it before use if it isn't (like my disposables) already lubricated. But I'm not a urologist! I suppose if cost is an issue, reusing  a baloon catheter, or using the same one for a long time, is obviously cheaper than single use disposables; but as you say, resusing certainly increases the chance of infection.

      I can't answer your question about urethrography v cystoscopy; I've had both and also CT and MRI scans, and none of them have shown up ANY cause for my condition! (So I presume I don't have a stricture apart from the meatal one at the tip which has stayed open since they dilated it.)

      I don't know about sizes either - I use 12fr ISC, and I think I have a relatively narrow urethra. So 9 and 7 seem tiny! I recently tried out an 18fr which was a little painful to insert, and have wondered about moving back to 14fr ISC which would speed up my emptying. What would be the next size up from 9fr? 12? I think you would notice the change. But there's no point, I would imagine, in going smaller if you are trying to keep a stricture open.

      Best wishes,

      Colin

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    • Posted

      Hi Colin,

      Thank you for your reply.

      The balloon dilation catheter that I use is solely for dilating the strictures so it's ony left in for a minute, this is done daily. It is not for emptying the bladder. The balloon on the catheter is undilated while inserting it and that is part of the problem as it lays flat rather than round causing the edges to feel sharp. I did try to partially inflate it first, but then it would not go in.

      Seems strange at the time they did the rigid systoscopy (before stricture surgery) which I think is 15Fr, that the dilation catheter I was then recommended to use is only 9Fr ..I know this particular one only comes in 2 sizes 7 & 9Fr which does not leave much room for stepping down.

      I just mean in the event of difficulty inserting the catheter due to stricture closing in ...it would be nice to have option to step down to a smaller sizes.

      Urethrography Xray would avoid Cystoscopy irritation of the strictures but my Uro says it would have to be a Cystoscopy. I just think some info would be better than none as I was wondering what the creeping feeling was in the urethra ..perhaps it was from the infection.

      Have you looked into Oxigen pressure treatment in a barochamber?

      Just spoke to a man who is getting great refief from radiation side effects following prostate cancer treatment. It seemingly is good for healing ..don't have any further info on it.

      Regards

      James

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    • Posted

      Ah, sorry, I musunderstood about the balloon catheter! If it's only in for a minute, it hardly seems worth the effort of getting it in and inflating it and deflating it!

      That creeping feeling you describe sounds like what I felt when I had infections, as if pee were leaking down the urethra? Weird feeling!

      Yes, I understand now, that you want to have a size to step down to if things get difficult. Might be an argument for stepping UP while you can, I don't know. But as you say, if they could get a 15fr cystoscope in there, why not get you dilating with a 14fr. Who knows? If your urology department is anything like mine, they don't tell you anything in case it turns out they were wrong.

      All the best,

      Colin

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    • Posted

      Hi Colin,

      On the manufacturers website it actually says dilate for 20 to 40 seconds or until desired dilation is achieved. All I know is when I waited 3 days to get a new catheter I found it much more difficult to insert it, so daily use is keeping the stricture open and I'm over 2 months now since my last urethrotomy. Previously I had a second urethrotomy within 2 months of the first one.

      Yes that creeping feeling was exactly like urine leaking down the urethra ..yes indeed, very weird.

      My Uro refused to give me a referral to consult with a Urethraplasty specialist, stating that I am not a suitable candidate. I don't think he has the right to refuse my request?

      Thanks & Regards

      James

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    • Posted

      No I don't think he can refuse to refer you. It's just a matter of how much you respect his judgement.

      That must be disappointing, to see your stricture return so quickly if you stop dilating. I suppose because I have to ISC four times a day, I'll never know if I have a stricture, or injury that would rsult in a stricture if I stopped. If I stopped, my bladder would fill up and burst and that would be that! I was afraid when they dilated my meatal stricture that it would return, havig red horro stories abotu returning strictures in this forum. But they were pretty confident it wouldn't, and six months or so later it hasn't - whether that's thanks to their skill as surgeons or my frequency of ISC, I don't know.

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    • Posted

      Well, I want to hear it from the horses mouth, rather than from someone who is not a Urethraplasty specialist.

      I don't envy you having to catherise 4 times per day ...but as you say better than the alternative.

      That's great your stricture has remained open ...give yourself some credit for that.

      Does your sphincter muscle remain closed all the time?

      I was told a regular dilation catheter cannot dilate a stricture at the bladder neck, which seems odd, if they are not using a balloon dilation catheter then I can't see what else they can be using.for dilation at home.

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    • Posted

      Hi James,

      4x a day is no big deal now, after a year! But it was horrible the first time I went away from home, and had to find toilets in tearooms, cafes and bars at the right time. Nowadays I don't worry so much, although I do worry about infection in some of the public toilets I've had to use - worst of all, on a train between Glasgow and Edinburgh!

      Yes, my sphincter seems to be locked up completely. It's always a bit of a push to get the catheter through it before the tip enters the bladder and the pee starts to flow. I don't think there's a stricture there however - no one has ever suggested there was.

      I don't know about dilation catheters, if they are different from what I'm using. Maybe if they are not designed for urination, only for dilation, they may not be as long - mine are 40cm long and I would say that I need 35cm of that to get into the bladder. Certainly, steel dilation rods are much shorter than that, and I think only designed for strictures before the sphincter.

      But obviously your baloon catheters DO reach into the bladder. Are they hollow or solid? I mean, do you pee through them while they are in? Or do they keep the urethra blocked so nothing leaks out while you are dilating? Something I'd never thought about!

      Best wishes,

      Colin

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    • Posted

      Hi Colin,

      I know what you mean about difficulty getting past the sphincter muscle, but lately I'm having more difficulty with the urethra stricture.

      I'm wondering could the Instillagel be part of the irritation, don't know if there is an alternative.

      Does acupuncture offer any help in trying to reactivate the sphincter muscle?

      This report mentions Hyperbaric Oxygen treatment ..I know it's discussing Cystitis ...but also mentions bladder irrigation.

      http://emedicine.medscape.com/article/2056130-treatment

      I had an allergic reaction to the antibiotic ..never had that happen before ... red spots are worse today bit it's only 2nd day on the antihistamine.

      The balloon dilation catheter I'm using is for dilation of the bladder neck stricture & urethra stricture only it does not empty the bladder as it does not have an opening in the end, it has a small curl tip at the end to help get past the strictures ..it's this one

      https://www.cookmedical.com/products/uro_udbs_webds/

      Regards

      James

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    • Posted

      By coincidence I am having acupuncture treatment (from a physiotherapist) for something else at the moment,and I asked her whether treatment for the bladder (not specifically the sphincter) might be possible. She thought it would be, but from a Chinese acupuncturist rather than a Western one - as she reminded me, there is in Chinese acupuncture a bladder channel of energy. So I will try that next! (Western acupuncture needles the muscles directly affected, so obviously can't treat anything buried as deep as a sphincter or bladder.)

      I am not sure how useful Instillagel is, I must say. I was given some when my fitted catheter was causing severe irritation around the meatus, and it really didn't help. In fact in the days after the fitted catheter was removed the irritation developed into a stricture which was incredibly painful to force my 14fr ISCs through, even though my ISCs are pre-lubricated, and even with the additional use of Instillagel. It's supposed to be mildly anaesthetic, but I was unimpressed!

      Sorry about your allergic reaction to the antibiotics. That's just sheer bad luck! And thanks for the link to the baloon dilator - really helpful to be able to visualise! Thanks too for the link to the article about oxygen treatment. I'll make a moment to read it later today.

      Best wishes,

      Colin

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    • Posted

      Hi Colin,

      That's very interesting about the acupuncture ..worth a try.

      I will have to try an alternative to the Instillagel just to see does it make a difference. It's just interesting to see how some people have no difficulty self dilating a stricture for years.

      Regards

      James

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    • Posted

      I have used ordinary baby oil on occasion, but not with medical approval - it was certainly a better lubricant than Instillagel! Let us know what you try and how you get on with it - I hope you find somethign that works for you.

      I am going to wait for acupuncture until I have a clear window. At the moment I'm in the middle of various minor courses of treatment which might muddy the waters about the success or otherwise of the acupuncture.

      All the best,

      Colin

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    • Posted

      Sorry to jump into your conversation here, but, any suggestions on how to deal with the bladder sphincter? It seems to present a bit of pain as well as significant resistance for me, and, I'd appreciate any guidance on how to deal with this challenge. My urologist told me that my strictures were about an inch before the sphincter and said that during my daily ISC dilation, I actually don't have to go into the bladder once I get the hang of it, but, I'd like to make sure I can go "all the way" every once in a while, and have been having some difficulty with that.

      Thanks in advance,

      Steve

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    • Posted

      Hi Steve,

      I do get a bit of discomfort sometimes crossing over into pain when I pass my ISC through the sphincter into the bladder. I assume this is just irritation caused by my not always taking the utmost care - I have to ISC four times a day and sometimes I don't have the patience I should. My solution is just to go very slowly through the sphincter, which certainly reduces the discomfort. The pain doesn't seem to get any worse, although I don't know (and nor does my consultant) what is wrong with my sphincter - it just won't open at all, so I guess that it is clamped so tightly shut that forcing an ISC through it whenever I want to empty my bladder is bound to be difficult and irritating to it!

      But I certainly experience the same pain and resistence as you do by the sound of it, so (without knowing the details of your condition) maybe it's normal. I think from other threads here that other people also experience that difficulty when passing ISCs through the sphincter. Are your dilation ISCs solid, or do you urinate through them if you enter the bladder?

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    • Posted

      Thanks Colin - After doing ISC a few more times in the past 24 hours, I'm starting to wonder if I'm actually experiencing a bit more pain and/or resistance going through the prostate area rather than the sphincter itself. When I had my last urethrotomy three weeks ago, I also had a prostate biopsy done at the same time (which fortunately turned out negative), but, maybe I still have some lingering soreness and inflammation from having those 12 needle samples taken? Not sure. I'm currently using 16Fr. LoFric Dila-Caths to keep the "pipes open". I don't want to cause any damage or further irritation of course, but I do want to make sure I'm doing what I need to do.
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    • Posted

      I should mention that when I removed the resident foley catheter that I maintained for five days following the urethrotomy, I took careful measurement of the exact distance from the balloon to the spot on the catheter where it exited the tip of my penis. Then, I make sure to insert my ISC dilation cath to the same length so that I'm pretty sure that it's very close to my bladder opening. At least, that's my logic. It's just difficult using the Dila-Caths because they don't let me know when I'm in the bladder (seeing urine drain out), but on the other hand, they don't have the eyelets which can be quite irritating to the former stricture area.
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    • Posted

      Yes, I suppose the urine coming out is a sure sign that you're in the bladder! Good thinking, measuring the length of the foley when you removed it.

      I had never thought that the eyelets might be irritating - I've never had a sense of that myself.

      I suppose your Dila-Caths will be passing pretty close to the prostate, so it might well be the source of the pain - but I don't imagine you'll be doing the prostate any harm except slowing up its healing a bit. You should ask someone who knows what they're talking about! but if I were in your situation I think I would be more anxious to keep the urethra open. Glad your prostate biopsy turned out negative, anyway.

      All the best,

      Colin

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    • Posted

      Hi, James,

      I happpened to be surfing your thread when I chanced upon the paragraph in your message:

      .......could the Instillagel be a part of the irritation .....

      I have no experience with this particular product but I was having irritation problems generally. I tested a whole bunch of different urethral lubricants before finding one that was reasonably comfortable. However, this could have been due to allergic reactions or sensitivity of my urethra so no guarrantee of success. But, try different brands ....You never know!

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    • Posted

      Hi Alan,

      Thank you for your comments.

      I switched to the Speedycath today and that seems to have solved the problem. Much easier to insert without the irritation. Only problem is the size 16Fr compared to 27Fr with the balloon dilation catheter.

      James

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    • Posted

      Hi James,

      Glad to hear that SpeediCath is helping things. I suppose the drop from 27fr to 16fr must help with the pain too, although obviously you are worried that it will not keep the urethra open as wide as the inflated balloon catheter. But perhaps 16fr is enough, and perhaps 27fr was irritating the stricture and making it more likely to close up? I don't know if there's any medical logic in that idea!

      I've been on SpeediCath from the start over a year ago and the only trouble I've had was a meatal stricture caused not by the SpeediCaths but by a brutally inserted Foley catheter. As the stricture started to close up, I moved from 14fr to 12fr SpeediCaths, but even using a 12fr three times a day didn't stop the stricture continuing to close, and eventually they had to dilate the stricture under general anaesthetic, in May 2015. That was successful and I've had, touch wood if you'll pardon the expression,no trouble since.

      I hope the SpeediCaths continue to do the trick for you. Cheers,

      Colin

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    • Posted

      Hi Colin,

      Yes, the Speedicath is so much easier to use and without the irritation ...such a relief. 

      It ''is'' a big drop down from a 27Fr (when dilated) catheter to a 16Fr.

      I did actually try partially dilating the other catheter and used it after first dilating the strictures with the Speedicath ...it worked, as previously I was unable to insert it after partial dilation ...still some irrtation with it but at least it's round in shape when patially dilated ....as opposed to flat.

      I'm surprised that after dilating three times per day that ''your'' stricture still closed ..self dilation certainly did not work for you, 

      Well done on no stricture recurrence ten months on.

      James

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