My PAE didn't last and today I tried Urolift

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Hi guys, I haven't posted in some time. I had a PAE in July 2019 and while it didn't ever give me a great stream, it got me off the drugs that didn't agree with me and my sex life improved to a level it had not been at for years. However, it seems that other small arteries increased their flow and 15 months after my PAE I was retaining ~150ml and my sex life was suffering heavily.

I opted for what I deemed to be the next best choice, Urolift. I found a urologist with lots of experience, it is her primary go to solution for BHP. I had a cystoscopy and rectal ultrasound Monday and 6 Urolift clips this morning (Thursday). She explained everything she was seeing during the cystoscopy and I was watching on the screen. I don't have a median lobe, or any kind of flap, but with the bladder filled with fluid and looking back at the exit, you could easily see what looked like a volcano dome, bulging into the bladder where my 63 gram prostate was extending the bladder neck inwards.

My outpatient time is the hospital was about 5 hours total, arrival to back in the car. Much quicker than my PAE when I spent 5 hours on the table in the surgical suite, and around 10 or 11 at the hospital.

However, my body's reaction is very similar in some ways. I've been home for a few hours now and I'm visiting the bathroom every 10 to 20 minutes.

Let me start with what I experienced right after the procedure, when I started remembering things after the "twilight" drugs wore off.

I felt like I needed to urinate, and of course they wanted to capture it. I can't pee lying down, so I suggested standing, when that didn't work I asked if I could sit on the toilet (elongated bowl) with the portable urinal in the bowl. 25 ml the first time, 100 ml the next, and a bit over 100 ml the third, all pretty bloody but it was enough for them to release me with no talk of a catheter.

Just before I left for the car I used the toilet a 4th time, without the bottle and I suspect it was even more.

I have six clips, 3 pairs (right across from each other left and right) somewhat evenly distant thru my prostate. The device reminds me, just a bit, of the pneumatic hog ring gun I used when I worked on a mink ranch at age 16. It's far more precise and hi tech but the overall process of adding a ring is a location to hold something without having to be shaped by the things you are holding, just by the tool is similar.

So over time, as the hours are passing, the amount of blood in my urine has greatly reduced, but there is still some blood at the beginning every time I start a stream so far, and I have passed a few small clots, and the amount of blood changes a bit when a clot comes out.

I was prescribed Phenazopyridine for pain and Sulfamethoxazole/Tmp (antibiotic). I was also told the I could take Motrin or Naproxen, I haven't yet but plan to before bed.

So, I'm pretty well caught up to current in my story. I'll start comparing to my PAE experience, with PAE there was no blood, but with both there was frequent urination in the hours after the procedure, and some significant discomfort with both. In both (for me) the pain is felt most when starting the stream, which is every 10 or 15 minutes right now. When I had me PAE, I didn't sleep longer that an hour at a time the first night, but my prostrate was larger and I was on Tamsulosin to reduce my retention from ~500 ml to less than ~150 ml. This time (Urolift) I had it done early enough to not restart the drugs that really bothered me in the past. I was never in a study or anything so my prostrate has only been measured a few times. About a year before my PAE it was (I think) 64 as measured by rectal ultrasound. I'm confident that it shrunk some after the PAE as my symptoms were greatly improved for several months. Monday it was right about back to about that size at 63 grams. This seems to be a size where I am greatly impacted, generally visiting the bathroom every couple hours day and night, 24/7. Always need to know where another bathroom is in the next two hours, makes travel a pain, except when we take our motorhome, of course with COVID, I haven't yet been willing to visit an airport, I have a couple outer issues and am considered immune compromised.

I'll see how I do tonight and provide updates. Our bodies and DNA are all a bit (or more than a bit) different and this is just my story of my experience as I found reading others experiences helpful in my decision making process. I also looked at data from a number of studies that influenced my decisions. I didn't read but I heard about a study that suggested that bad experiences are 30 times more likely to told online. I think my experiences may be closer to middle of the road or better. I have frequent and regular pain in my life, and tonight I'm clearly less comfortable than I've been for quite a few nights, but I'll rank it as less pain then when I fractured my foot (proximal metatarsals) several weeks ago. And I think less than that first night after my PAE, I put the PAE between this and the fractured foot.

-Dale

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6 Replies

  • Posted

    Day 2 update, last night I slept at least 4 hours straight. This morning my urine has nearly no blood left. I did drink plenty of fluids and I did experience some urgency and starting a steam was at times was uncomfortable. But overall it was a great day, I was up and about and felt good enough to get some things done. I'm following the post op instructions, taking Advil and the prescriptions, a sulfa antibiotic (precautionary) and Phenazopyridine for the pain associated with the stream. Turns the urine very orange. I am considering that that the urolift may have benefited from the PAE, at the very least it bought me some time and I wasn't retaining as much urine when I had the urolift.

  • Posted

    Hi Dale,

    I have not posted in a while either... thanks for sharing your story.

    We are in a similar boat! I'm 55 years old, had a PAE in April of 2019.

    I am still doing very well, but after 19 months post PAE, I can tell things are starting to slightly revert, thankfully just barely starting to revert.Stream not quite as strong and up 2 times per night.

    Still no issues with urgency and so long drives are fine and I can hold it in when I need to. Really no retention to speak of.

    Overall , I am super glad I did it and if at some point I need to re-address the problem, I will consider a 2nd PAE.

    Maybe at our youthful age the prostate just regains its strength and starts growing again.

    Good luck and keep us posted on urolift progress.

    • Posted

      Bob I communicated with you soon after your PAE. I have an appointment with the same DOC at ucla in January. I've procrastinated long enough. Have to get my pre lab work and prostate c-scan before my virual visit with the doc. I live in South OC. Any suggestions or advice? I would like to have heard you say that you were doing as well as when we last communicated but I'll take 19 months of relief I can get it. Hope to hear from you.

    • Posted

      Gary,

      I am doing great! My life before was , frequent and EXTREME urgency. I could not hold it in. I would pee and then 30 minutes later, stuck in traffic, I would have to exit the freeway and find a place to pee NOW!I also had three full retentions.

      That is gone, I can hold it for hours if I need to.

      I only mentioned in my last post that I can see that my stream is slightly weaker than when I first had the procedure done and one time up at night has turned into two times.

      The procedure was so easy and the recovery was so fast that I would not hesitate to do it again if I needed to.

      dr McWilliams is the greatest! good luck to you!

  • Posted

    I believe my Urolift was very successful. It's been over 2 weeks now and I had my first post procedure visit at the urology clinic. I now have zero retention as compared to 140 ml a few weeks ago. Recovery was even quicker than it was with my PAE. Other than passing blood in the urine for a couple days and the usual frequency, urgency, etc. that seems to happen every time they do something, (I even get some of these effects after a cystoscopy). The best part is that sex is vastly improved and it feels like it did when I was in my 40's again. It was improved after the PAE but not to this level, and then it started declining, maybe 9 months after the PAE, certainly by a year. I'm also now able to sleep for 6 or 7 hours without wakening. I did change urologists for this, my new urologist is a woman and she does lots of Urolift's, and has been doing many for some years.

  • Posted

    Just had my Urolift today. I can't believe how fast I'm recovering. Surgery was at 10:30 a.m. When I first came out, there was a significant (but not overwhelming) amount of pain, especially when urinating, and I felt like I had to pee constantly and it felt like there were glass shards at the tip of my penis.

    Now it's 8:15 p.m. and I feel so much better. Still some pain. Still blood in my urine. But the feeling of having to pee constantly is almost gone. When I go, it's still hard to start but that's apparently because there are clots of blood that get stuck. As soon as they come through, my urine flows like it hasn't in many years. And it's just the first day.

    There's definitely a lot of luck with these procedures. If things continue to go well, suffice to say I'll be among the fortunate men.

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