Posted , 4 users are following.
Hello. My urologist and I agreed that a minimal TURP of the median lobe would help me empty my bladder. I'm 58 and in good health, this is something you don't want to put off until later in life apparently. PVR of 300ml showed my problem and I was having some issues at night where I needed to pee but couldn't after a lot of water consumption in the evening. Seemed like things were getting worse over time. I have a very long prostate, runs in the family, not eligible for Urolift. Here's the timeline:
TURP #1 done. I removed Foley a few days later, no urination. Foley #2 installed. Doc then suggested TURP #2 to remove more tissue, scheduled for 2 weeks after the first.
TURP #2 done. A few days later removed Foley #3 and had some natural voiding but it stopped. Foley #4 installed, removed a few days later to continue the "voiding test". Ended up in the ER with 1.4L of urine in the bladder because I didn't know what else to do. Foley #5 was installed. Removed Foley 1.5 weeks later (to give bladder a chance to rest). Some natural voiding was looking promising but that stopped 2 weeks ago. Meanwhile, I'm trained and set up for intermittent self-catheter use as I watch for natural voiding to resume. (I wish I had this tool weeks ago to save 2 trips to the ER)
As a side note, the instructions I was given once I went home were overly simplistic and left out a lot of detail about things to expect such as bleeding/clots oozing out of the urethra at various times, the joys of removing a Foley from oneself, learning to live with "leg bags" and "night bags" connected to a hose in your urethra for weeks at a time. What to do if the Foley plugs up? What to do if the collection bag plugs up? I'm in high tech and am not used to things like this. I've learned so much.
I've noticed a pattern where I start to have some natural voiding (75-150ml each time) for a few days , but then it stops. It feels like my prostate is confused, tries to function and then just doesn't want to open up any more. The urologist said it will happen naturally, only time will tell. With 40-60g of tissue removed during TURP #2, shouldn't this "just work"? Is it true that the bladder neck opens and in doing so, must coordinate with the prostate to complete the path to the "exit"? With 1.4L of urine in my bladder in the ER (that was an interesting experience), what could possibly block this tidal wave of urine from coming out?
Next up my doc wants to do a Urodynamics test which sounds uncomfortable but with all I've been through, I'll get through this. Goal is to show if bladder is elastic enough. I guess if we rule out the bladder, then we look at the prostate again to see what is happening. I need to have a plan/next steps since using self-installed catheters 4-5 times a day is not my idea of a solution.
There seems to be a hesitation to remove too much tissue from the prostate, just enough to fix the issue. Hints indicate that if I had cancer of the prostate and some tissue was left, that's what you'd remove vs having just the capsule remaining and then having a need to remove the prostate completely and things around it too.
This urologist is very experienced, highly recommended but is terrible at explaining the big picture strategy. He doesn't speculate. I was hoping the collective wisdom and experience on this message board would give me some new ideas and keep me from becoming depressed. I'm willing to be patient and work through this if I knew what was around the corner.
0 likes, 15 replies
hank1953 michael31017
Posted
You might want to try an alpha blocker to see if it could help with the natural voiding. Hank
michael31017 hank1953
Posted
Thanks for the suggestion, Hank. I was on Flomax 0.4mg but my urologist wanted me to stop to keep the "voiding test" natural with no help from meds.
rob78162 michael31017
Edited
I'm 60 and had my Turp 7 weeks ago but have had a different, perhaps more traditional, route. My problem, like you, was my median lobe. I had a failed Urolift in 2015 as it didn't address (nor was it FDA approved) for median lobes at that time. I kind of bought into the brochure and the BS from the urologist and had it done. I ended up with a catheter for a few days and 6 weeks of misery and no improvement. That's a story for another time.
For my TURP (with my new urologist) it was always planned for me to spend the night in the hospital with a catheter that would be constantly irrigating my bladder with saline to flush it out. The hope was that they would remove the catheter in the morning and that I would be able to pee and go home without a catheter and fortunately for me that is what happened. My doctor was great about what I would see in terms of bleeding, clots, burning/stinging when I went home. I saw her in the office about a week after the surgery and she said that I would soon to start to see the scabs from the prostate start to fall off and make their way thru my urine. I should note that while my median lobe was my real problem I also asked my urologist (and she concurred) to do the lateral lobes as well. I told her to take out as much as she could of the prostate capsule within the limits of a normal TURP without risking ED or incontinence. I should add that I didn't care at all about RE (retrograde ejaculation) and I knew going in that it was very likely and didn't want to go thru the operation again.
So, let me try to address some of your questions:
The Urodynamics test is a little awkward but not that bad but it is usually done prior to a procedure to determine which part of your problem can be attributed to a weak bladder vs. an obstructing prostate. This way a doctor can kind of manage your expectations, so to speak, for any prostate procedure that you may be considering. In other words, if your bladder is weakened then while a TURP (or any other procedure) will remove the blockage but it won't help with a weak bladder. Kind of like telling you whether it is going to be a double or a home run. Anyway, for the test, they put a catheter into your bladder, hook up some sensors to you, fill your bladder up with fluid and then you pee. Due to the catheter you are bypassing the prostate so it's just the bladder functioning on it's own. I had this test done and it showed my bladder was fine and that that prostate obstruction was the problem.
Let me address your question as to whether 'shouldn't things just work' now that the prostate obstruction has been removed. This was explained to me by my urologist prior to my surgery and I'll give you a short answer and a long answer. The short answer is that your urologist is right, it does take time and here is the long answer: Urinary symptoms can be broadly characterized as obstructive and irritative. Irritative symptoms are due to changes in the bladder wall which develop in response to bladder outlet obstruction. As the prostate grows and obstructs the bladder has to contract harder to generate more pressure thus expelling urine. This increase in tone results in a thicker stiffer bladder wall which is what causes increased daytime frequency, urgency and an increase in peeing at night. The TURP relieves the obstruction which causes near immediate improvement in flow/pressure. It is then down to the bladder to "relearn" and adapt to changes in outflow obstruction. Its this re-learning process which can take some time and the reason why men will still get up at night following an "un-obstructing" procedure. Simply put the obstructive symptoms improve first then irritative or bladder symptoms such as frequency and getting up at night gradually improve. My urologist told me that 'relearn' can take up to a year but in most men it happens after a couple of months. I am seeing that improvement in my own recovery as I am down to getting up about once a night and I've even slept thru the night a few times a week. The brain-bladder connection is strong and your bladder is used to many years of pushing on an obstruction and quitting and deciding to try back in 20 minutes (or however long). Little by little it learns that it can push harder and empty more and eventually it stops 'thinking' that there is an obstruction there.
Whew, I hope that all of this makes sense and that some of it is helpful. You've been thru a lot recently and I know that it is tough but if the Urodynamics tests shows that your bladder is fine then I think that you just have to be a bit more patient with it and hopefully a little progress will make you feel better.
Rob
michael31017 rob78162
Posted
Thanks for the detailed comments, Rob. Regarding the Urodynamics, my urologist says I get a 7FR catheter in the urethra/bladder and one 7FR in the rectum. Not sure if the rectal path is a sensor to sense pressure or what. I agree if we can rule out the bladder, then the focus will be back on the prostate which is what I expect to happen. My bladder worked well enough in the past in my opinion. My cousin's blockage situation was much worse than mine and his bladder was fine.
I do appreciate your comments on the "brain-bladder" connection. I've been off a foley and trying to get this connection to work for a little under 4 weeks. I can tell my prostate is still not completely "normal" since I get all sorts of little twinges and the occasional blood from the self-cathetering. Perhaps I need to be more patient. What I cannot understand is why I was able to get some moderate voiding for a week then it just stopped. Maybe it's another aspect of the brain trying to figure this out?
rob78162 michael31017
Edited
Correct, you get the catheter in the urethra/bladder and the rectum that measures muscle and nerve activity on a machine that shows whether the bladder and sphincters are working in synch. I had BPH for probably over 20 years and again it wasn't that my prostate was huge (in fact, it was only 30 grams or so) but it was that the median lobe was blocking the bladder outlet. As a result, my bladder wall showed some thickening (from pushing against the obstruction) on a pre surgery MRI but my urodynamics showed that even with that slight thickening that my bladder was still able to do it's job. The bladder wall thickens not only in response to the size of the obstruction but how many years it has been pushing against it. I remember asking my urologist pre surgery 'Is there a possiblity that my bladder won't respond even after we do the TURP?' and she said 'It's a possiblity but I don't think so but job one is to remove that blocking median lobe and go from there'. In my case, she was right and my bladder/brain are making good progress.
Re: getting good voiding and then having it stop, could it be maybe that it was due to a clot or scab and that it might have inflamed the urethra? I would also guess that self cathing inflames the urethra as well but I have no experience with that. That brain/bladder re-connection doesn't happen in 4 weeks with most men, it is more like a couple of months. Btw, I still get some pain, twinges, and the occasional drop of blood when I pass a scab, it happened this morning.
Btw, I saw the suggestion from Hank regarding Flomax and like you my urologist told me to stop it after my surgery (I was on .8/daily). She told me that Flomax relaxes the urethra channel and that my urethra channel was now wide open due to the TURP so that there was no need to take it but it is something that you can bring up with your urologist again since you are self cathing and that might be causing swelling in the urethra.
Keep the faith, I think that you are on the right path!
Rob
hank1953 michael31017
Posted
When are you going to have the next test? You can always take Flomax again, and stop it few days before the test.
Are you having any problems with self cathing ? What catheters are you using ? Hank
michael31017 hank1953
Posted
The Urodynamics test is being scheduled but with the US Thanksgiving holiday coming up, it's taking some time to find an open slot. I assume it will happen before the end of November. That's true I can take some Flomax 2x per day as before, but if I get some results, I can't really share with my urologist since it's likely not indicative of the prostate working "naturally". I do like your idea, though.
I'm having reasonable results with the self-cathing. The sales reps for the supply companies (there were 2 at first) set me up with a good selection of samples to try. I keep notes on every self-cath event in order to track frequency, discomfort, etc. I'm using the Magic 3 and Magic 3 Go catheters from Bard . I'm also using the ConvaTec GC Glide catheter. I alternate back and forth between these thinking that my urethra would be less annoyed if I do. I do feel that my urethra and path to the bladder is irritated some days and some days not at all. The Magic 3 Go is nice because it can be folded into thirds to fit in my jacket pocket when I'm not at home. All of my caths are 16Fr, 16" with a coude tip.
hank1953 michael31017
Posted
Yes, what brand of catheters used can make a big difference. For 3 years I had all kinds of problems when I was using the Coloplast Speedicath hydrophilic. They are very stiff and must have caused some injuries or cysts in my urethra. For a year now since I switched over to softer catheters, most of my problems are gone. Some problems I could not have thought that are due to catheters, like RE, ED, incontinence, lost of natural void, regular bleeding, etc.
Hank
michael31017 hank1953
Posted
This is really good information, Hank, thanks for sharing. I also tried Speedicath and another brand that was very stiff. I found it also to be uncomfortable so when I ordered my first month of supplies (just 3 weeks ago), I didn't order any of these. I also tried the Hollister VAPro which has a full protective sleeve and a blue plastic thing at the end that is supposed to fit in the urethra for full protection as the catheter moves into the urethra. Couldn't get the damn blue plastic into my urethra without forcing it, so I didn't. I ended up liking the VAPro if I pulled the sleeve material and blue plastic thing off before use.
I do all I can to keep clean during cath use. Lots of hand washing and wiping of the penis head with a wipe just in case.I don't want a UTI if I can avoid it.
michael31017 hank1953
Posted
My test is scheduled for Dec 3. Oh boy!!
michael31017
Edited
So I had my urodynamics test which showed that my bladder was operating with sufficient force when my bladder reached about 250ml of cold saline. (It can do more with warm liquids as I have proven at home, around 400ml or so). This means that my prostate is still getting in the way.
My urologist wants to do TURP #3 now since it's clear to him that the prostate is still in the way. Originally I thought that one gets ONE TURP then it's done. Since then I've heard that large prostates in the 100g + range either require a surgery like my cousin had where they come in with multiple laparoscopic probes from the abdomen into the bladder to core out the prostate in one shot and then months of recovery, OR the surgeon does multiple progressive TURPs until things work. Given the invasiveness of the first over the relative quick recovery of the 2nd, I can see why my cousin's first urologist said it might take 5 or more TURPs to get the job done.
Has anyone else heard of multiple TURPs until the problem is solved for large prostates?
I'm talking to some experts before I decide who will do surgery on me next.
TKM michael31017
Posted
Michael,
Was the first TURP you had a minimal TURP of the median lobe only ? Another person on this forum said he had a Mini TURP on the median lobe. It sounded like it was working well for him, so I replied to him and am waiting to hear back. The Mini TURP sounded good to me since I also have an enlarged median lobe and would like to avoid RE if possible. Can you describe more about your minimal TURP of the median lobe ?
Is it possible that some of your urinary blockage could be caused by blood clots or bladder stones ?
TKM (Thomas)
michael31017 TKM
Posted
Hi Thomas. Yes, the first TURP was a minimal resectioning of the median lobe. My doctor thought this would be a good starting point to remove that part of the prostate to open up the channel for urine to pass. After it was done and failed to help, he mentioned something about a "collapse" that closed up the area he just opened up. I assume this is due to the fact that my prostate is rather large. That's why he went in and removed quite a bit more tissue in TURP #2 which also failed.
I asked about the blood clot idea of being a problem but was told it has to be more of a serious obstruction to hold back 1.4L of urine as seen when I had to visit the emergency room of the local hospital a while ago for another Foley catheter. He hasn't mentioned anything about bladder stones.
michael31017
Posted
UPDATE: I had TURP #3, Foley #6, etc, etc this week and seem to have finally gotten results. Urologist found that the tissue surfaces from TURP #2 had somehow grown together but I could still sneak a 16FR CIC in there a few hundred times. TURP #3 involved a lot of tissue removal likely so that my doc won't have to go back in there again for a while. 4 days later, I removed my Foley today and am able to pee naturally whilst still sore in a few places. Let's hope this doesn't go away any time soon.
michael31017
Posted
UPDATE: It's been 4 months since TURP #3 and I continue to pee rather normally. Healing continues with less discomfort each day. I keep thinking it will stop any day now, but I want to be wrong. Going away for a 4 day weekend soon and this time I won't be carrying boxes of catheters with me. 😃
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