my urethrotomy experience, good and bad parts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

sorry for wall of text

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  • Posted

    Hey buddy. Sounds like my story as well, I have had a restricted urine flow for as far as I can remember, am 35 now although I never really bothered as I got used to it. Over the past couple of months I started noticing blood after peeing. The GP did blood test and urine culture but all came back negative. I was referred to the urologist, an ultrasound of bladder, kidneys, pancreas and urine test showed nothing so he booked me in for for cystoscopy and optical urethrotomy. The procedure took about 30min...±2hrs till recovery, the inserted catheter was removed 4hrs after the surgery as the Dr said urine is clear and he doesn't prefer keeping the catheter in. He told me I was extremely blocked with only a needle hole left to pee and would have been totally closed in the next couple of weeks/months. My first five pee sessions we extremely excruciating ( I usually absorb extreme pain but boy o boy this was to much) and definitely more blood that urine and there was a load of clotting too coming out, I had to drink loads of water which increased the urge to pee although the pain got slightly better due to increased dilation from uniray frequency. I was prescribed antibiotics and mild pain killers at discharge but didn't seem to help at all. In a week's time I have to go back to the doctor , he has to teach to dilate with a catheter twice a day for a couple of weeks to avoid narrowing again of the urethra due to the scar healing. For the first time in my life I m peeing like a horse as the doc said, i must just learn to slowly deal with pain at the end of urination in the coming days - any advice on this is highly appreciated.

    How are you doing now after your second urethrotomy, are you still dilatin and how often. From the stories I m reading is there a chance that this narrowing won't go away for good or it's just some cases.

    Considering the benefits in the long run it is worth it , three days of pain management is really nothing compared to a lifetime relief.

    • Posted

      I've had a few surgeries and now dilate weekly.

      I was offered the full urethral re-construction but I now have two blockages, one near the bladder (probably from past surgery) and so the suggested success rate they said for one was about 80% but for both blockages it probably drops down to about 60%.

      I'm 37 and decided that I didn’t want to try the full surgery with such low odds and get caught in a surgery-loop.

      After urethrotomy I closed again pretty quickly but now dilate on  a weekly bases.

      I get sent disposable catheters, which are really easy to use. There is  some discomfort (not much and it only takes about 2 mins) using them and I’ve opted to do it once a week to keep everything flowing really well and it works great!

      Post surgery though, your first few dilations will hurt like a ******* until everything is healed (use painkillers). You just need to get through that stage to the other side where the pain is gone and you’re healed.

      From the papers I read urethrotomy pretty much always results in the scar tissue forming a blockage again eventually. However, the frequent dilation will stop this becoming a problem. I've been doing it now for 2 years and it still works great (previously, after urethrotomy, I started to close in a matter of weeks).

      So, dont be discouraged when things start to slow again and consider intermittent-dilation. It works great and no more surgery. I'm very happy smile

    • Posted

      I forgot to say, with dialting I've had 0% infections. I use the lofric and they are package sterile

    • Posted

      Thanks once again , this info helps a lot for the first timers on this procedure. 3days post op with no catheter in and the pain is mostly but gone and I just have to keep pumping fluids to clear the bladder. I m going back for check up and self catheterization demo in 3days, hopefully ​the scar pain would have subsided... I appreciate the info.
    • Posted

      After my last op i had the cath in for a week and started self-cathing after then.

      It WILL hurt the first few times but keep with it. And, take painkillers prior to your first session (mine may have been more painful than avergae though, due to the length of the two treatmentsm but i'm sure pain killers will help)

      Self-cathing has a massive drop-out rate which i'm sure is to do with the pain in the frist couple of weeks. After that its plain sailing and you'll be so glad you stuck with it. Good luck dude!

    • Posted

      Great. The urologist insisted I heal for another three weeks before I can start self catheterization even though I had opted to start right away. I would rather endure the pain in first few sessions if that's the gateway to restriction free. His opinion is that after six months of self catheterization the urethra should stay open for good but I would be happy to continue regardless... Thanks for the support... Will give you feedback in 3weeks.

    • Posted

      You may be a lucky one, but I would say to make sure you have a good supply of disposible caths after 6 months, so that if you feel it closing you can open-up quickly and without surgery. Its easy!

      If I go 10days, I notice a recution in flow and so I cath on roughly a weekly basis.

      Good luck dude!

  • Posted

    Hi All, I had a urethral dilation in December and am still in pain after urinating.  After having further tests another hospital has found bacterial prostatitis.  I have been placed onto Nerve pain drugs which don't seem to touch the constant burning in my urethra and back passage.  This is so frustrating, although I had a dull urge to urinate prior to the dilation I was fit, healthy and had no pain.

    Now I am left with Chronic pain and I dred going to the loo.. Any ideas?

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