April 30, 2018 at 1:02 am #1732
Time for an update. I’m hopeful it will help others that might be facing or going through what is, in my estimation, an atypical or more severe urethroplasty experience.
As previously mentioned, my stricture problem started from a catheter injury as a small child and I had three unsuccessful uretrotomies over the years. I’m in my early 50s.
Prior to surgery I was told what I think I already knew – that I had a “very bad urethra” that was heavily scarred. While I somehow never really suffered from recurring UTIs or anything like that, my stream was like trying to pee through a coffee straw, or even worse if I had to go really badly.
On 3/2 I had my urehtroplasty. Unlike most, my urologist decided while I was on the operating table to perform the procedure by making an incision in my scrotum rather than the perineum. He repaired a full 10 centimeter stricture within my penis using the usual graft from skin within my mouth. That’s not a type-o — 10 centimeters.
Exactly 2 weeks post-surgery, you’ll note above that I posted I was concerned with swelling. I called my urologist on the day I made the post about my swelling concerns and was advised to just keep an eye on it because my fever was low grade, sometimes rising to 100 at night but usually just a pesky 99.5 or so. This was on a Friday.
By Sunday, about 48 hours later I remained concerned with the swelling and was also getting some slight drainage from a sore on the side of my penis and a sore on my scrotum just above my incision. I called the urologist on duty and again was told not to worry as long as my fever wasn’t 101 and my catheter was draining fine. That night, I woke up around 4 am in pain from what I figured was due to an erection. I looked under the covers, lifted some gauze and literally puss from infection started spraying out of the side of my penis. So much puss that it soaked the bottom of my t-shirt and soiled the sheets of my bed. By 6am I was in the ER being examined by a freaked out, and I assume grossed out, young ER DR. He just said, “oh yeah, that’s puss, a lot of puss, we need to have urology look at you” and ordered blood work. Luckily, my surgeon was scheduled to perform a surgery that morning so he was able to come by the ER and examine me. I assumed things were really bleak and that I was going to be admitted to the hospital. Instead, my surgeon simply proceeded to start squeezing my scrotum like he was wringing a dish rag. He basically squeezed almost all of puss out of the sore in my scrotum and on the side of my penis. He acted like it wasn’t that big of a deal, prescribed me different antibiotics, and released me to return home.
I felt immediately better and the swelling subsided to a point that my penis was almost recognizable as mine 🙂
Ten days after the ER visit (27 days after the surgery) I returned to my urologist to have my catheter removed and for the VRUG test. I was worried about the appointment because I was continuing to get drainage from the not quite healed sores on the side of my penis and on my scrotum. Turns out I was right to be worried. When the catheter was removed, I was unable to pee at first. When i finally did start to pee, urine literally sprayed out of the sore on my scrotum in addition to a spraying and uneven stream from where urine is supposed to come out. So, I unfortunately, had to have the catheter re-inserted (it was brutal) and was sent home with another 7 days of antibiotics. I can’t say I was entirely surprised by the outcome because my gut was telling me before the appointment that I wasn’t quite ready because I still had some minor swelling and the continued mild drainage from the sore on my scrotum. A follow up appointment was made for 26 days later and I was sent home with a new catheter.
Over the next 26 days I continued to heal and the swelling in my penis continued to gradually subside. I returned to my urologist last Tuesday, 54 days after surgery, to give it another go with the catheter removal and VRUG. This time when the catheter was removed I was able to pee. The stream was a bit splayed and there was a fair bit of blood but I was able to go home without a catheter!
Since Tuesday (this is Sunday) my stream has been great as far as I’m concerned, though it often starts with a split stream before becoming “normal” and at times, starts to drip around the stream before I am completely finished. In any event, it is night and day compared to pre-surgery and every time I go I can tell that my bladder is completely emptying. It is an amazing feeling to pee and feel finished. This may sound a bit over the top, but I’ve been drinking a lot of water, peeing into a measuring jug from the hospital, and timing how long it takes to empty my bladder with the stop watch on my phone. The good news is that I’m emptying my bladder at a rate that is above average for my age group. I also feel great overall.
I am not naive though. This soon after catheter removal it would be shocking if one didn’t have a good stream. I know I certainly had a great stream for some time after my 3 failed urethrotomy procedures. So, my biggest fear for sure is that the urethroplasty will fail and that the stricture will recur as it always has in the past. From what I’ve read, the chances of recurrence increase significantly with longer strictures so the 10CM I’m dealing with make me nervous.
So, that’s my story so far. Just holding my breath that my stream continues like it is now. And, hoping that the split stream when I start, and the dripping around the large nice stream, aren’t indicators of a coming stricture recurrence. I go back to the urologist for a check up on May 10th. He had told me in advance that a 2nd surgery to repair additional stricture more in the bulbar region might be necessary at some point in the future.
I’ll try to continue to post updates. I hope the details of my “severe stricture” experience don’t scare anyone that is facing a urethroplasty. If things continue to work like it is now, or even slow down a good bit, there is no doubt it was the right thing to do. Fingers crossed.May 4, 2018 at 1:21 pm #1733heyitsmeParticipant
Wow that’s a helluva story. Sounds like you have been through hell but glad you came out well on the other side. I’m now 2 weeks post-catheter removal and my stream remains strong. Like you, I hope this is permanent because it is absolutely fantastic thus far. Keep us posted.May 5, 2018 at 3:33 am #1734
Glad things are going well for you heyitsme. I’ll continue to post updates, most likely after my next follow up appointment late next week. I found the experiences of others to be of of the most valuable resources for me even though no two are exactly alike so I want to return the favor so to speak.
Best of luck and continued healing to you.May 11, 2018 at 7:08 pm #1752
Had a follow up visit yesterday. Pretty uneventful. They simply did a uroflow test which came out fine. 14ml per second if I understood the DR correctly.
I say for sure that my stream has slowed since the catheter removal a little over 2 weeks ago. If things stayed as they are now, or even regressed a little and stabilized, I’d be happy. I just maintain the concern that the gradually weakening stream since the catheter removal is an indicator that the stricture is going to completely come back and the surgery will have been a failure —like the past urethrotomies I had before the urethroplasty.
Dr. said it’s pretty much wait and see. Does anybody else have experience with the stream weakening in the weeks or months after catheter removal, but then sort of stabilizing and continuing to weaken further?May 12, 2018 at 10:13 pm #1755barryParticipant
Anonymous- did you have a 1 stage surgery for a penile stricture?May 12, 2018 at 11:01 pm #1756
Yeah. It was a one stage procedure. There was some discussion about a 2 stage but we ultimately decided to go with a one stage operation. I had not incisions made on the penis itself. The DR went in through a horizontal incision on the scrotum. Stream is definitely slowing down but I’m hoping it stabilizes at some point and remains opened up at a level that remains a significant improvement over where I was at before surgery. In other words, I’m hoping the stream doesn’t continue to weaken from what it was like the first week or so after the catheter was removed.May 13, 2018 at 3:46 am #1758barryParticipant
What was your flow rate before the Surgery? Any idea?May 13, 2018 at 5:29 am #1759
Didnt have the uroflow test presurgery but I can tell you it was extrmemly slow and the worse I had to go, the slower the stream was. I described it to my dr as trying to pass urine through a coffee straw, sometimes slowing to a drip. Never really fully emptied my bladder either. If having a few beers with the boys would often feel like i needed to go again within minutes of going.May 13, 2018 at 3:41 pm #1760heyitsmeParticipant
Anonymous, I had the same symptoms as you. Coffee straw and the worse I had to go the slower it got. I did a bladder voidance test and after completing, was told I still had 500+ mL in my bladder.
Thankfully, 6+ weeks post-op I am still peeing great. Definitely follow up w/ the doc. Could be something minor keeping you from full flow. Or something totally unrelated.
My only issue is that I still have a lot of pain in my scrotum and where the cut was made. Makes it very difficult for me to walk. I look like a penguin right now. I’m calling the doc this week to see if this is normal or not.January 26, 2019 at 8:33 pm #1934
OK, so here is an update for me since my March 2018 surgery and post-op experiences I noted through May 2017.
So, unfortunately, my fears were realized and my stream continued to get slower and slower. I had pretty much resigned myself to accepting that my surgery had been a complete failure when I returned for a follow up visit with my surgeon in September.
We did a flow test at the SEPT appointment. I don’t know what the flow rate was but it was extremely slow, almost pre-surgery slow. My surgeon asked if I had a few minutes for him to take a look and I said sure. He then proceeded to dilate and stretch the heck out of my urethra. I was squirming on the table and it was not a fun experience to say the least. When he was finished, he said “scar tissue” had returned and I would need to go home with a catheter for a few days because of the extent of the dilation he had just completed. This surprised me and was demoralizing because the last thing I expected on this routine follow up appointment was to be sent home with a catheter.
A few days later I returned to the surgeon and had the catheter removed. Flow was incredible. At this appointment the surgeon said that he would like me to try intermittent self-catherization as a way to keep my stricture open. He cautioned that the success rate wasn’t great but that he thought it was my best option for now.
I was skeptical and frankly a little freaked out by the idea of inserting a catheter into myself. Nevertheless, I decided to give it a go and began self-cathing once a day back in September. Fast forward to now and my flow remains great. I’m cautiously optimistic but am happy I’ve been able to maintain a great flow for over 4 months since things seemed so bleak before the Sept 2017 appointment.
Anybody else have experience or success (or failure) from post-op self-catherization?January 26, 2019 at 9:36 pm #1935
Meant to say May 2018 and September 2018, not 2017 in the previous post.
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