BNI/TUIP experience
Posted , 11 users are following.
Hello,
Had BNI 16 days ago and decided to share my experiences as I found this forum very helpful before the surgery. Maybe this will be helpful for others.
I am 34 years old, for last 10 years my flow has been gradually slowing down when two years ago I also started having significant increase in frequency during the day and also getting up 2-3 times a night. As a result, I became constantly tired and my life became quite miserable.
Went to 3 different urologists, all said that my prostate looks perfectly normal and small (15 ml).
Last one did a bit more extensive diagnostics with flow measurement and cystoscopy. My Qmax was 10.8 ml/s and through cystoscopy and shape of my flow curve he again confirmed that everything is fine with prostate, but I was diagnosed with high/tight bladder neck and a small stricture in bulbar urethra. PVR after voiding variated between tests and was between 50 and 100 ml, which was not ideal, but still OK according to him.
For a year I lived with Tamsulosin, which increased my Qmax to 14-15, however it did not help at all with my frequency during the day or night.
This winter I went for a regular check up. My Qmax was still 14.8, but my PVR raised to 200ml and my doctor now recommended to perform BNI.
I was informed about risks, especially about retro. But since I already have kids without a plan to have more and I felt what it is to have retro with Tamsulosin, I did not feel this is a big issue for me.
Day 1 - very stressful. First surgery in my life. However, I was under general anesthesia, so I just woke up in recovery room with everything already done. First feeling was that I had a lot of pain in the head of my penis, I looked at it and there was blood (not bloody urine) coming out, which was unexpected for me, but doctor explained it that it's due to trauma from resectoscope, gave me some morphine and within 30 minutes I was feeling very well. I hope he did not f**k up and made a stricture in my urethra.
Another surprise was that I did not have any catheter. Seems like doctor decided to see if I can pee on my own and if I can, then just let me go home without catheter.
I got to drink a lot of water and after ~1 hour I tried to pee. Flow was quite bad, but I managed to pee out 250 ml of very bloody urine and after check with ultrasound it seemed that I fully emptied my bladder. I did that again within an hour and had quite similar result, just that my PVR this time was 70ml. Doctor said that it's good enough and I can go home. So I checked in to hospital at 8am and left at 1 pm. Very different compared to experiences I read online.
Day 2 - Living on paracetamol and ibuprofen according to doctors prescription. I got to combine these two and use them for at least for 3-4 days with max dosage. A lot of pain in urethra while peeing even with all the pain killers. Urine is still very bloody.
During the day flow started to reducing from a very thin and slow stream to only a dribble by the end of the day. I called doctors office and he said that I should go to ER if I it's very hard to pee and to see how much PVR I have. If it's above 100ml, then I should get a catheter.
Went to ER. Had 450 ml of urine before, then took around 8 minutes to squeeze out everything I can and after that I had 110 ml. Doctor at ER, said that it's too small margin to 100 ml "limit" to put catheter in, considering that my urethra has been already traumatized. So we decided not to do anything and if it gets worse to come back to ER.
Day 3 - The night was quite ok, got back to thin stream, but in the morning my urine totally stopped.
Back to ER.
However, before getting to doctor I went one last time to the toilet pushed a bit and suddenly a couple of blood clots went out. From that moment urine stream has slightly recovered and I left ER without seeing a doctor. A couple of next urinations had a lot of blood clots in them and after each urination my stream has improved.
Day 4 - 8 Pain in urethra has started subsiding and finally disappeared. Stream has increased and became better than before surgery. Urine become clear without any blood. Frequency is still the same as before surgery. At least not worse...
Day 8 - 12 Sometimes some clots and blood shows up. Stream is not improving anymore. So at the moment it's definitely better than before surgery, but no where near what I had 10 years ago.
Day 12 -13 Some new things. Urine started smelling quite bad and I started to get a very annoying itch in my urethra. No pain or fever, so probably not an infection. However after a couple days smell went away and I was left only with an itch, which is driving crazy.. cause well it's impossible to scratch.
Day 15 Itching is gone also. Urine stream is the same. Frequency during the day seems to be the same, but it has improved during the night. Last 3 nights I only got up once, which has not happened in probably more than 3 years.
Day 16(today) - Reduced flow and split stream. A bit scary.. hopefully just another clot coming out soon.
BTW. 16 days without any sex or masturbation is driving me crazy... My doctor and everything online suggests no sexual activity for at least a month. Anyone knows why and what would happen if I would not follow this recommendation? I understand that sex can put some strain on abdominal area and bladder. But how about masturbation?
1 like, 25 replies
lars40399
Posted
Day 17 -20. As expected reduced flow was due to blood clots coming. It started with a very bloody urine, then the flow fully stopped and after a while a couple of huge clots came out. After this a lot of symptoms got worse, more frequency, more urgency, intense bladder spasms, even pain in urethra. Also flow was significantly reduced. Fortunately, after 3-4 days everything subside and started getting better.
Day 24. Sex! Finally! Everything felt normal. Seems like I did not get retro, hopefully that stays. A bit of burning feeling in urethra after ejaculation, but it disappears within 15 minutes. Stream is quite good.
The only thing that still could improve is frequency. I pee every 2-3 hours and get up at night once or twice. Better than before surgery, but not what I would consider normal.
brian07009 lars40399
Edited
Lars. Thank you for starting this thread. Im 38 been having similar symptoms for about 5 years now (weak stream, frequency and waking up which is a nightmare!) Ive been to two urologists who both performed DRE said my prostate is "tiny" and suggested prostatitis with "life management" (no caffeine, spicy foods, alcohol etc) well that hasnt worked. i guess my wuestion is, how were you able to get flow tests etc. Did you take a PSA test along with other testing. Both urologists i saw did not think one was needed.I read about prostate cancer and it scares the heck out of me. Anyhow, its reassuring to hear someone my age has gone through similar symptoms and that there can be light at the end of the tunnel. Thank you for sharing your story it means a great deal
lars40399 brian07009
Posted
Hi Brian.
First urologist whom I visited 10 years ago was very similar to what you describe. He "diagnosed" non bacterial prostatitis just by DRE and urine sample, which showed no bacterial infection. He also said that the only way to treat it is with "life management". Back then I did not have very intense symptoms. Stream was still quite good and I only had increased frequency in the evenings. However, over the years everything was just slowly getting worse.
2 years ago I would say my "real" prostatitis started. Then just one day I suddenly had a constant urge, burning sensation, pain in urethra and bladder and significantly reduced stream. I went though 3 different urologists with no clear answer until I found my latest one who I would say was the most thorough and had some sort of explanation.
Last urologist did a bunch of tests. Of course started with my urine and semen samples for bacteria, PSA and DRE. He did not find anything in semen or urine and my prostate felt fine for him, but my PSA was elevated (~3). PSA in general is not clear indication for cancer and at our age it is very uncommon to have prostate cancer. However PSA can also show that your prostate is inflamed for whatever reason. Since my PSA was elevated he did prostate and bladder ultrasound and uroflowmetry. My bladder seemed OK, also my PVR. My prostate seems fine, quite small and with no signs of cancer, but there was some calcifications which indicates that there was inflammation in prostate. My Qmax was only 10.8, but he said it could be due to swollen prostate. He prescribed Tamsulosin for me and said to wait a couple of months until inflammation subsides.
After two months a lot of my symptoms got better, but my Qmax was still low. That's when he suggested to do cystoscopy to find out what is blocking the flow. There he found 3 things: small stricture in urethra, no problems with prostate blocking the flow and tight/high bladder neck. His conclusions was that over long years tight bladder neck tired down my bladder and eventually caused all of these symptoms. And that having this surgery would make my bladders life easier and should eventually remove other symptoms.
What I want to say is:
It pretty much took me 5 urologists until I found a good one. I am actually from Sweden, but there's so much more information in English that I decided to join this forum. So I don't know how it works in your country and how much you can influence that.
For urologists it's very hard to determine what actually causes non bacterial prostatitis. In my case there was actual anatomical reason, but I don't know if it's the case for you.
Firstly, I would try to find urologists that cares...
Secondly, would suggest reading up online about all the different prostatitis cases. And if you will be diagnosed with non bacterial prostatitis, then there's good groups online like https://www.ucpps.men/ or Reddit subgroup called Prostatis.
Jams777 lars40399
Posted
Hello Lars;
First of all I hope you are recovery well. My question to you was the TUIP worth it?
I suffer a lot of frequent urination a night and quite a bit in the early hours in the morning because I have to drink coffee to stay awake at work after a bad night of getting up all the time and interrupting my sleep.
My uro diagnostic me with a elevated bladder neck and because I have a very small prostate less than 30 grs. wants to preform a TUIP like you I have never had any surgery but the frequency is affecting my life. In your situation has the frequency stopped also will this operation cause to have any leakage .
I have an average PVR of 104 mls which apparently is not too serious but tamsulosin doesn't work for me.
Please when you have a chance send me your thoughts , do you see an advantage in
getting this procedure
best regards
Jams
lars40399 Jams777
Posted
Hi Jams,
Well I am still only 6 weeks after operation. According to most of other experiences I have read on this forum regarding TUIP/BNI, frequency drops gradually and it can take up to 1 year to fully settle. Currently my frequency is pretty much the same as before the surgery.
You can read this thread
https://patient.info/forums/discuss/recovering-normal-urination-after-a-bladder-neck-incision-622287?order=oldest#topic-replies
Regarding the leakage, as far as I know, it can only cause leakage temporarily for a couple of weeks after the surgery and even that is quite rare.
However, the most common complication of this surgery is retrograde ejaculation, so you won't be able to have kids in a traditional way, if that's important for you. But erection and sex should not be a problem. Luckily I did not get this problem either.
lars40399
Edited
6 weeks after surgery
Unfortunately my recovery is not as expected.
What has been expected reading upon other experiences is that my frequency and urgency is not very good. I have pretty much the same frequency as before the surgery, which means every 2 - 3 hours during the day and 2 - 3 times at night. The only additional thing that I did not have before surgery are bladder spasms, so when I have to go, I pretty much have to rush to the toilet.
What is very disappointing is that for the last couple of weeks my flow has been going down and at the moment it seems pretty much the same as before the surgery.
Today I visited another urologist, since my usual one, whom recommended TUIP is on vacation until end of summer. He started talking that with BNI/TUIP this happens, since cuts that were made start to "grow back together" and bladder neck starts to again close down. This is first time I heard or read about this.. Anyone else with similar information/experience?
He said that flow might improve a bit more, since everything is probably still swollen and can take to settle down up to 3 months. But I should not expect big improvement. So at the moment I am quite disappointed. It was pretty much the main thing why I went for this surgery.
The only positive things from this visit were that my PVR was 40 and I got prescription for OAB drugs.
hamza1995 lars40399
Posted
Hello, I would like to get in touch with you in other ways. This site is extremely sluggish and laggy. Could you please let me know? I have BNO as well as stricture.
Jams777 lars40399
Edited
Hello Iars
i hope your doing well, your posts has help me a lot . So i had the courage and had Tuip surgery 8 days ago , the surgery was done about 250 miles from my home so its a 4 hr drive. Surgery went better than expected was fast about 35 mins. very little bleeding I did had a foley catheter place in me . I stayed at the town where i had the surgery for 3 days on the third day went to the Doc. and he removed the catheter he did balder training injected 120 ml and urinate 115 ml. Everything look good and set appointment in 90 days to do bladder scan . So i decided to drive back home i did make stops every 45 mins and was able to urinate fine with some pain . Arrived home had an early dinner woke only once to urinate with some pain , went back to sleep and woke up at my normal hour 5:00 am i was happy to be able to get a good night sleep so I went with my daily activities when 4 hours had pass and had urge to urinate and wasn't able I call my doctor offices and told me to head to ER
because i might have a blood clot blocking me and sure enough that was the problem i tried very hard to urinate by my self first because i didn't want catheter again but was only able to urinate 150mls they did bladder scan and still had 300 ml so they placed catheter and send me home , i had it for 2 days and then was removed .At this point i have a strong flow but the urgency is quite frequent but again the flow is strong and clear at this point i think i made a good decision because i am able to get good night sleeps something i didn't had in more than 4 years
Please keeps us updated in your progress they have help me a lot and let me know if you need and feedback from me on my with TUIP surgery experience
lars40399
Edited
Update. 8 weeks after surgery.
Things seem to be slowly improving.
My flow is slowly getting better and now it almost as strong as it was right after surgery. The only strange thing is that it's not stable and every urination is different, sometimes stronger, sometimes weaker, sometimes stronger in the beginning, but in the end it only dribbles etc.. But overall I see positive trend.
Frequency is a bit better. But I am on OAB diet (no coffee, alcohol and spicy food) and medication (solifenacin 5mg twice a day). Most probably it is diet and medication that is helping. Now I get up 1 - 2 times a night, but I don't drink anything past 8pm. During the day, it really depends on my water intake, but I would say that I go every 2 - 3 hours.
Urgency is settling down also. Bladder spasms are less and less frequent and seem to be mostly "psychological". It never correlates to how much urine I have in my bladder, but I always get bladder spasms if I am near the toilet or if I hear running water. So washing dishes is always a very exciting activity...
Going to see my regular urologist in two weeks. Where I will do uroflowmetry and really see what is the situation with my flow.
Lensworld lars40399
Posted
You are taking OAB medicine. Solifenacin lowers flow rate but also slightly lowers urgency and frequency.
I have the same problem. Can you please check your message?
Lensworld
Posted
Same problem as in tight bladder neck. Taking Alfoo and Urotone. It is not helping at all. My flow is only 2.3 ml/s average. 😦
Lensworld
Posted
I think I have no other choice but surgery, but um only 27 and not married yet.
lars40399 Lensworld
Edited
Sorry to hear,
I was of course in better situation since I already have a family that I want.
Are you diagnosed with tight bladder neck?
You should talk with your doctor about all the possible solutions and don't hesitate to change urologist to get a second opinion. From the first onset of symptoms 10 years ago to the moment I had surgery, I went to 5 different urologists, just to hear different opinions and see if their diagnosis matched.
Have you tried other medication to relax your bladder neck/prostate? I tried Alfuzosin (Alfoo) for a short time as well, but it was not very effective for me. Tamsulosin actually helped me much more.
Finally, if surgery is the only choice...
I know that there are ejaculation preserving TUIP, but not many doctors do that, maybe you can find one.
In addition I can suggest to freeze some of the sperm. I did that before the surgery, just in case...
Lensworld lars40399
Posted
Are you from India?
brian07009 lars40399
Posted
Hey Fellas. Thanks for continuing the diologue. Just a quick question for you all. Before treatment did you guys ever have retention? One of the troubling things for me is if i sleep through the night (6-8 hours) i clearly wake up with a little bit of bladder "burn" and intense urgency. Unfortunately its extremely difficult to go. Starts off with a weak dribble then a moderate to bad flow. I do void about 500ml in volume but it takes a while and i dont feel emptied or "satisfied." This happens at times too when j feel my bladder is extremely filled and im gonna burst, the void is difficult. Anyhow, i guess my long winded question is did you guys ever suffer with something similar to this "retention experience" im having in the mornings or when i really have to go? Thanks
lars40399 brian07009
Posted
Hi!
My retention was slightly different. If I waited until my bladder was extremely filled, I just couldn't void everything at once. My stream would be very strong in the beginning, but then long and slow in the end. And around 1 minute after I finish I could urinate 200 ml more.
My assumption is/was that my bladder over the years off "small voids" does not know anymore how to void larger volumes at once. But it's my uneducated guess..
It never happens at night, cause I usually just get up when I need to go.
And now that you mention I would say it does not happen again... I don't get these "double voids".