Under the
SilGro home page for Alan Silverstein and Cathie
Grow
Email me at ajs@frii.com
Last update: October 22, 2023
Here is some background information on why I collected and am sharing ideas (for males) in four webpages about: tricks to deal with AUR (acute urinary retention), how to self-catheterize, and how to live with a Foley catheter, plus some "free advice" on living with BPH. I'll talk about BPH (benign prostatic hyperplasia) AUR (acute urinary retention), [self-]catheterization (Foley/indwelling + CIC = clean intermittent catheterization), drug treatment (such as tamsulosin and finasteride), and arranging but then postponing HoLEP surgery (since Dec 6, 2022, until/unless I desperately need it). It's been a wild, horrific, traumatizing, and educational ride for me, so I have a lot of details I can share.
Standard disclaimer: I am not a doctor. This is not medical advice. I offer this just in case it helps you with useful ideas. Personal discretion is advised.
One major learning for me is just how complex, variable, and unpredictable enlarged prostate symptoms and progression can be. So if you read this, bear in mind that my experience might or might not correlate with yours... "Take what you can use, and let the rest go by." -- Ken Kesey.
Also just for fun, go study male prostate anatomy, it's astonishingly complicated! Here's one great website I found (so long as the link works).
Note that the "benign" in BPH merely means non-malignant (not cancerous), it does not mean non-malicious. AUR is life-threatening (and increasingly painful) if you can't empty your bladder or get to an ER fast to be catheterized. It can result in permanent kidney damage/failure, or even a ruptured bladder.
OK here's my story:
Around Nov 2011 I was diagnosed with BPH, initially via DRE (digital rectal exam). I tried but rejected Jalyn = Avodart (dutasteride) + Flomax (tamsulosin) after one week due to unpleasant side effects, and ended up on tamsulosin 0.4 mg instead. Also at this time I visited a urologist and passed a void test (which means ultrasound showing < 100 ml retained after emptying), at about 75 ml remaining an hour after peeing. I also requested and received a basic catheter "just in case", that I carried for years on all overnight trips (not knowing the difficulty I would have using it without training!)
Over the following years I occasionally found it difficult to start, continue, or finish voiding, mainly at night; along with frequent sudden urges to go, mainly after caffeine and/or while sitting and driving. For example I recall a cold night, probably in 2015, shivering outside a tent in Wyoming desperately trying to somewhat empty before getting too cold. But I discounted these problems as "rare and manageable", not realizing how close I was skirting to the "edge of a cliff". I thought I had my condition under control... In hindsight, I was complacent and in denial.
In late 2020 I had enough problems one night to experience bladder spasms, take two Azo, and eventually empty well enough to return to bed. I saw a general PA the next morning (at which time the Azo caused incontinence!) After a second close call about a month later, in Feb 2021 I visited a (new) urologist with my concerns. They had me do a void test (47 ml), pronounced me just fine ("go forth, be fruitful and multiply"), and that was that. In hindsight, this doctor did me a huge disservice by not starting "active monitoring", doing TRUS (transrectal ultrasound) for size measurement, talking me into trying finasteride ASAP, etc.
Early in the morning of Oct 11, 2022 at age 66, I was horrified to find myself completely unable to pee one night (AUR) after ejecting only 10-15 ml. Despite using every trick I knew (fewer than are now listed in my AUR tricks page), we ended up going to an ER, which was fortunately only 10 minutes from home and also not busy at the time, where they inserted a Foley catheter (I had no idea they were going to leave it in!) and drained 850 ml of urine (that's a painful lot) less than 3 hours after the fun started.
I immediately started double tamsulosin (2 x 0.4 mg), and on Oct 14 added finasteride 5 mg. (By Dec 18 I seem to be tolerating both surprisingly well, and have not had a serious relapse either!)
My Foley experience might have been unusually awful: urethral/penis stinging and other pain often but intermittently (causing difficulty sleeping too), balls-in-a-vise sensations, hemorrhoid flareup, gastritis, even a bad return of (years ago and mostly gone) thigh paresthesia (nerve issues) in both legs, probably due to sleeping on my back... But when I finally figured out how to sleep sideways with the Foley, that triggered more bladder spasms and blood clots!
The urologist (same office I'd seen in Feb 2021) said to leave the Foley in for a month... No way! Eight miserable nights and days later on Oct 19 the Foley was removed. First they injected 480 ml of saline, which I was able to void (painfully and intermittently) over the next 20 minutes or so, hence they pronounced me "cured" and sent me on my way. When I asked them first for a newer catheter, they did me a favor by handing me a bag of quality samples of four types (from 180 Medical), but with no real training ("we don't have time, we're squeezing you in today"), and also limited time to ask the doctor questions.
Two nights later I blocked up again (even while still quite sore and healing up from the first Foley). Attempting self-cath (CIC = clean intermittent catheterization) for my first time, I drew serious blood (pissing bright red blood is very traumatizing!), ended up at the ER again, and this time spent 11 more even-worse nights on a second Foley.
(Later I learned that in addition to a huge 146 cc prostate, I also have a tendency to bleed during catheterization; although I never noticed any hematuria, go figure. The problems caused by an enlarged prostate are highly variable. For example, not everyone has their worst problems the first time they wake up overnight, like I do.)
After both ER visits I received some handouts on Foley care, later viewed websites on how to self-cath (that turned out to be inadequate), did other web searches, talked with many people, and learned a lot by painful experience. This resulted in me gathering the related information here for myself, and then deciding that (as is my nature) I might as well tidy it up and share it.
When I visited a different urologist on Nov 1, 2022 just for consultation and a second opinion, he pleasantly surprised me by saying, "let's take you down the hall for a look?" -- meaning cytoscopy, which was long and painful (started with flushing blood and clots out of my bladder), but very informative: Enlarged lateral + median lobes, friable mucosa (easy to cause bleeding), moderate to large bladder protrusion, bladder trabeculations, cellules, and bullous (blistery) catheter-related changes at dome, etc.
He wanted to send me out with another Foley, but I talked him out of it. So instead they did another void test, which again I passed fine (0-25 ml). (Apparently this test is not very meaningful for me!) He also said that with my friable mucosa, his RN didn't want to teach me self-cath, but I used a previous appointment the next day with the first urologist (actually a nurse) to accomplish that (drawing only a little blood this time, with better technique).
After the second Foley removal (Nov 1) and subsequent self-cath training (Nov 2), I fully expected to "lock up" again soon. Sure enough the second night I had serious difficulty again, but we found some new tricks that dodged having to self-cath or revisit the ER... And it's been much better since then! (Even through October 22, 2023.) Especially after days => weeks of slow healing up from both the physical and emotional trauma.
The same (second) doctor did a TRUS (transrectal ultrasound) for me on Nov 11 which showed my huge size (146 cc), but less obvious median lobe enlargement. This qualified me for HoLEP (rather than TURP) surgery, but he had to refer me to a different, third, doctor who specialized in the procedure.
It was Dec 6 before I finally was able to talk with the third urologist. At that time he reluctantly agreed that so long as I continued to do well, it was OK to postpone the surgery! I went from desperately wanting to get it over with -- frustrated by a very slow and difficult scheduling process, but that's another story -- to being glad it had taken so long!
Update October 11, 2023: Starting Nov 15, 2022 I only logged significant difficulty peeing (not every nightly visit), almost always the first time waking up at night after 1.5-6 hr asleep. In 208 nights I recorded 22 events (avg 1/9.5 nights), annoying but so far always able to resolve within 5-15 min of patient relaxation, squatting up and down, and a few times, standing in an inch of hot water. Often returning to pee again, up to 200 ml more, within say 30 minutes after laying down again. Never had to self-cath yet, nor return to the ER.
Whenever I can't start within about 10 sec, I switch to using the calibrated bottle, note the time, and reluctantly work through intermittent bursts of voiding, often quite a bit, like 400 ml total. Apparently my kidneys sometimes produce well over 100 ml/hr. Have not been able to correlate consistently back to any previous days' activity or intake, other than apparently salty and/or gassy food, especially late in the day, causing water retention (overhydration) and, for whatever reason, not waking up with (strong) urge until my bladder is very full, causing median lobe "ball valve effect".