BPH Advice needed. Sorry, long read.
Posted , 17 users are following.
Not sure if my circumstances are unique but I've been reading through posts for a while and thought I would see if anyone has had similar issues and could offer me any advice.
11/2017 Age 47. After several hours of dealing with pain in my kidney for what I assumed was a kidney stone, I went to the ER. I had been drinking copious amounts of water to flush the suspected stone. The ER confirmed a stone and also said I has lots of fluid in my bladder (1400cc) and wanted to insert a foley. I declined. I figured with all the water I was drinking it was to be expected and I was still peeing normally or so I thought. 4 days later I'm back in the ER for the same pain but this time I did not drink water. The ER takes a measurement of fluid in my bladder and it's at 1000cc. I knew I had a problem then. I allow the foley cath and damn was that painful! I had bloody puss discharge for 3 days after insertion. It was a very traumatic experience.
10 days later and still wearing the foley, I see a urologist who has the bedside manner of a brick wall. He does a DRE & cystoscopy and says my prostate is enlarged but doesn't mention any obstruction during the cystoscopy. He can provide me no answers and shrugs his shoulders as to what might be wrong. He orders a urodynamic study. I'm trained to self cath by the nurse and have been doing it for almost a year now. My psa is a low .59 and cancer is not suspected.
After that visit, I go home and start reviewing 3 CT and ultrasound tests from the prior 3 years and I come to realize that these tests all show I've had a distended bladder since at least 04/2015. For 2.5 years my bladder has been distended but the symptoms were so subtle I did not recognize It. My primary doctor never mentioned it either which I find troubling as well. Looking back now I realize I had issues with weak stream and having to go frequently but given my age and that I was still peeing normally or so I thought most of the time, I didn't give these symptoms much thought. My urodynamic study was finally done 03/2018. The Dr. told me that she didn't think surgical options would help me and she would send the final report to my urologist. That was devastating to hear and I figured I would be self cathing the rest of my life. All during the last year of self cathing, I've had numerous UTI's as well as prostatitis and I almost was hospitalized for an e-coli uti that wasn't responding to antibiotics. Overall I've been pretty miserable. I could deal with self cathing but I seem very susceptible to UTI's and I never had one until I started self cathing.
Finally a month or so ago I see my urologist again who says my Urodynamics shows high pressure and low flow consistent with outlet obstruction and he wants to do a Urolift. My current situation is I have a bladder that was severly distended for a long period of time. I self cath 4-6 times a day. I have no sensation of having to pee unless I have anywhere from 400-600cc in my bladder. When that happens, I can pee out maybe 50-150 cc on my own but my post void residual is 300-500cc which I empty with my cath. Plus the kidney stone I had is now in my bladder and 1.6cm in size. My prostate is 39.9grams. My urologist can't seem to tell me if this Urolift procedure will work and get me off the catheter or if my bladder has irreparable damage. Does anyone have any feedback on my situation? Feel free to ask questions. Thanks!
0 likes, 40 replies
stebrunner joe03114
Posted
Hi, Joe,
Your story is similar to mine. My urinary retention came on slowly. From my symptoms, I thought I had prostatitis. A physician's assistant gave me antibiotics and suggested I see my primary care doc. My doc ordered a CT scan, and after she saw the scan result, she had me rushed to the hospital where they drained 7,000cc out. The urologist at the hospital put in a Foley catheter--and howdy, that was painful!
After my hospital stay, the uros did all the usual tests--cystoscopy, urodynamics, etc. BTW, I completely failed the urodynamic test.
Up to the time they drained my bladder, I peed, pretty much as normal except for a slightly slower stream. The doc said my retention must have come on slowly. That's why I felt no pain from the retention. Since my AUR, I've seen 7 urologists. Six told me that I'd never be able to pee on my own again due to my extreme retention. All suggested various surgeries, but when pressed, admitted that the odds of the surgery working were very low. I asked each one his or her plan for rehabilitating my bladder, and received blank stares.
I finally learned how to CIC after being on Foley catheters for 3 months, and have been doing CIC for 2.5 yrs. Haven't had a UTI in over 1.5 yrs. My program for staying UTI-free includes the Jimjames dive-bomb CIC technique. Also, before I insert the catheter, I wipe the head of my penis with a Wet One's antibacterial wipe. When possible after I'm done cathing, I wash the head of my penis with soap and water. I take D-Mannose twice daily, which is effective for E-Coli based UTIs. I also take about 2,000 mg of vitamin C daily. The urology nurses I've worked with told me that CIC was a clean procedure--not a sterile one. However, they thought I'd soon tire of CIC and opt for surgery. I tend to error on the sterile side of things, as I don't want UTIs.
The uros I've seen focus on removing obstacles for peeing (clearing the pipe), and they are clueless as to how to fix the pump (the bladder). I figured out early on that my problem has two parts--the pipe and the pump. Couldn't find much info online about rehabilitating the bladder. So, I'm using Jimjames method to rehab my bladder. (You can read his threads on CIC and rehabbing the bladder on this site.) One key part of his plan is keeping your bladder volume under 400cc.
At this point, I can pee some on my own. It's not enough to completely empty my bladder, so I CIC 4-6 times a day. I've gone from peeing 2 or 3 drops to 280cc. My natural void amounts aren't consistent, but over time the average climbs. I always try to naturally void (NV) before I CIC. In the beginning, I'd have one NV before CIC. Now have double NVs before I CIC, which means my bladder is trying to do more of the work. It took some time for my bladder signal to start kicking in--but now I get an urge to pee when my bladder is about 200cc.
It's important to me to maintain my sexual function, and that's been my guide in treatment options. I did try PAE, but it failed due to my large median lobe. I prefer CIC over drug treatments, because I don't want to deal with drug side effects. I may try FLA in the future, but I'm waiting to see study results.
I also have a kidney stone that bothers me from time to time. I had bladder stones from my urinary retention and had those removed. The stones can also increase UTIs. My current uro told me my bladder stones might be problematic during removal and told me he'd do an emergency TURP if that was the case. I didn't trust him, so I had the stones removed at a clinic out-of-state.
Sorry, this response is so long, but I could really relate to your story.
Stebrunner
glenn77 stebrunner
Posted
Thanks for your excellent post. I was doing CIC for awhile, and really worked to be as "sterile" as I could. (Some on this board thought I was being extreme; in any event, I avoided UTIs .) I now have an excellent urologist at Wake Baptist who offered this important bit of information: He said no matter how careful one is in doing CIC, the lower 1/3 of the urethra is not sterile, and will have some bacteria. We didn't discuss whether there was some way to mitigate against such bacteria while doing CIC. I didn't purse that question, as I was no longer doing CIC. I have to believe that washing an staying as clean as possible would be helpful. Unfortunately, someone who is only voiding via CIC doesn't get the cleansing of the urethra from urinating a good number of times during the day and night.
Glenn
keith42667 stebrunner
Posted
SteBrenner: I always like to read your posts because the above is exactly what I am experienceing right now. I've been doing CIC for about 1 1/2 years. It sounds like you caught the urinary retention problem sooner than I did. At this point, I generally can still not pee out much before doing CIC but I always try without doing too much pushing. My urges seem to be more reliable now whereas when they first returned they were very "come and go" i.e. they would disappear if I didn't do something about it within about 30 seconds. Maybe I missed it but was it the cystoscopy that told you you have a large medium lobe?
Something else I've been wondering about that seems kind of significant to me: As I CIC I have to sometimes pull out the catheter about an inch or two to drain out the last part. There are times when I try to push it back in about that same amount and there seems to be an obstruction. Someone on one of these threads suggested it might be my bladder collapsing into the bladder neck. I never try to force the catheter back in, but the same opening that seemed to be there when I first put in the catheter seems to close after I drain. Maybe that is normal, but I guess I"m wondering if it could be an indicator of a large medium lobe. I've been to a Uro but he was going to put me right into GL surgery without doing the cystoscopy. At least I think he was... I cancelled my pre-op surgery appointment that was scheduled one week before surgery itself. Perhaps he was going to do a cystoscopy then.
stebrunner keith42667
Posted
Hi, Keith,
Yes, the cystoscopy that showed me my large median lobe. It seemed odd to me that the uros I've seen could not tell me how large my prostate is. Finally an IR did before I had my PAE. The uros would only tell me vaguely that it's large. Well, knowing the size is important because it can limit your treatment options.
Like you, I pull the catheter out a little to drain the last bit of urine. However, my large median lobe creates a little "volcano" cone at the bottom of my bladder, which prevents me from draining all the urine out. I don't try to push the catheter back in. You say you experience resistance when you do that, but I don't know if the resistance is from the median lobe.
Stebrunner
joe03114 stebrunner
Posted
Damn! 7000cc? Thanks for the reply
I use a 2 wipe process before catching. I wash my hands then use a BZK wipe. Then I follow that with an alcohol pad. I'm now taking D-Mannose and another product called Bio-Film Defense twice a day and just started upping my vitamin C from 1500mg to 3000mg. Plus I drink 24oz of Cranberry juice daily. My doctor said my bladder stone is contributing to my Uti's. Need to get it removed. What size was your stone and what was the procedure they used to remove it? Was it painful?
stebrunner joe03114
Posted
Hi, Joe,
My kidney stone is 5mm. As far as I know it's still in my kidney, though a few months ago I did experience some flank pain on that side. My uro said that the kidney stone isn't related to my urinary retention.
My bladder stones were probably the result of retaining urine. They were numerous, and caused UTIs, occasional bleeding, cloudy urine, etc. The surgeon was concerned there would be complications and planned to remove them via midline percutaneous cystolithstomy (through my abdomen). However, when she put the camera through to my bladder via my urethra, she saw she could remove them by transurethral cystolitholapaxy (through the urethra).
My procedure was done with general anesthesia, and I had to spend the night in the hospital. Had a Foley catheter in for 24 hours. Wasn't very painful afterward except for a botched Foley removal, and I was able to resume CIC.
Stebrunner
hank1953 joe03114
Posted
Hi Joe, Urolift will not reduce your retention. It might help your flow, but don't expect a big improvement since the average improvement in Qmax is only 3.5mL/sec, vs about 20mL/sec for TURP or HoLep. But Urolift has low risk of sexual side effects vs the others. Hank
TKM joe03114
Posted
Joe,
I have not had stones before, but it seems like the stone you have should be dealt with first. I have read about some procedures where stones and a BPH procedure were done at the same time. But there are others who say to do the stone first and a BPH procedure after. Is it possible for a stone to be like a ball valve blocking you bladder neck ?
One thing you need to find out before Urolift is a more accurate size (80g upper limit) and if you have an enlarged obstructive median lobe. If you have the enlarged median lobe you have to find a doctor who has done the new Urolift procedure for enlarged median lobe, that was FDA approved in May 2018. There are not many who have been trained to do it.
Best Wishes,
Thomas
owen35669 joe03114
Posted
Am reading all of these stories with great sympathy -- and some trepidation. Wondering if my symptoms are a sign of things to come.
I just completed a round of sulfameth for prostatitis -- after literally months of that feeling of a thorny hot orange up my uro-genital zone. Have had prostatis before years back -- but had actually forgotten, so didn't tell the uro about it and just suffered -- thinking it was just my prostate issue growing chronic.
But now that I am on sort of level ground again, I am still left to wonder why -- at 2 in the morning and 4 in the morning -- I have to void BUT it takes 5 or more minutes to do so, with not much volume to speak of with each dribble. Open...and close. Open...and close. Dribbling with each open.
This is not a problem in the day time -- this 5 minute sit and wait routine. (I do sit rather than stand as it so tedious in the middle of the night. Eventually, I empty most of my bladder in what feels like tiny milliliter increments. Again, twice in the night -- or less if I not drink fluids after 7. )
So I wonder: why in the night but not in the daytime, this sit and wait routine?
The uro just shrugs and moves on to the next subject. But I'd really like to know why and whether it is common for others, this sit and wait standard in the middle of the night.
I am re-committed now to losing weight (having lost 30 pounds over 2 years but need to lose 30 more in the belief that my still-significant belly fat is pressing on the bladder at night. I am age 72 and weigh 235. 5'11 tall and in overall relatively good health. PSA by the way is 2.35 -- supposedly normal for my particular test and where it was when I was 40.
So the headline question persists: Is it normal -- for someone in my situation - to have such difficulty voiding in the middle of the night compared to relative ease (albeit similar frequency) in the middle of the day.
But all in all, I feel for you cath guys and hope I never find myself in that predicament.
I think I'd rather have my bladder connected surgically to a tube and a bag and just be done with it, as the few times that uros have gone up there it has been been very very painful.
GLTA.
TKM owen35669
Posted
Owen,
Self cathing is less painful than when a doctor uses a cystoscope, because you are in control. When you feel pain you stop, back off, move more slowly, twist a little side to side. When a doctor is using a cystoscope he cannot feel your pain so he keeps on pushing it in, and sometimes they are trying to go fast. The catheters are usualy smaller diameter and more flexable material, and have plenty of lube. You might have a small amount of pain and bleeding the first few days, but after that you get used to it and it is not painful at all. It feels very good when your bladder empties down to zero. You can do things that take concentration much better without the distraction of thinking about where you are going to pee next. You can also sleep better.
Thomas
owen35669 TKM
Posted
Now THAT is consoling...as I have experienced the exact cystoscopy misery that you described and assumed it was the same. Thank you...and it will help when and if I finally need to go that route.
timothy81571 owen35669
Posted
I am 61 and also have issues at night , but ok during the day.
joe03114 owen35669
Posted
My cystoscopy was very uncomfortable. My Uro was spinning it 360 deg to look in my bladder. When I walked out of the appointment I was shaking. My wife even noticed it. I brought some percocet and popped one immediately. I stopped shaking about an hour later. lol!
barrie62598 joe03114
Posted
Hi everyone
There seems to be a lack of faith in a lot of our Urologists in this post. There are many new BPH/PCa treatments to keep up with and they have a tendency to prescribe the treatments they are more familiar with, those they make their bread & butter from. When you look at the medications they prescribe these have all cost millions to produce and millions more to get them past therapeutic regulators. Then there’s the prospect of billions back. This possibly leaves doubt over what deals are done between the pharmaceutical companies and governments/healthcare professionals with everyones interests put above ours???
Barrie