Urinary retention - looking for help from those with experience in CIC

Last August my PVR was 89 cc.

About 2-2.5 years ago, it was 50 cc.

Today, I went to see my uro's nurse practitioner. I was pretty dehydrated this morning and could barely get enough urine for them to test for bacteria and white cells.

But she measured my PVR on a brand new US machine. It was 4 cc.

I measured my urine output overnight (got up 3x and urinated 900 cc).

Usually, in the morning I will drink about 16 -20 oz of water plus 12 oz of green tea before heading to work. This morning I only had 8 oz of water.

After getting to work, I usually don't pee for 2-4 hours from the time I leave my house. This morning, I decided to pee before walking over to my doctor's office (a 30 minute walk).

I was pretty "tapped out" when I was asked to provide a urine sample.

However, my bladder was practically empty. That at least tells me all the liquids I consumed yesterday passed through me ok and I was not retaining 389 cc in my bladder.

I don't know what to make of all this.

I felt very hurried to have HoLEP because I thought I was facing AUR and a visit to the ER.

I'm going back in 2 weeks to have a repeat PVR test. That time I'll drink more fluids so I'm not so dehydrated and empty.

One night last week, I went to bed at 10 pm and got up at 2 am to pee 500 cc. Then I got up 3.5 hrs later and peed close to 400 cc.Before going to bed, I drank water and had a lot of watermelon. I took melatonin to sleep better. I thought I'd be up 5-6 times that night.

Other nights, I do get up 5 times, and sometimes 6 times, and feel like I cannot empty my bladder. There's no rhyme or reason to any of it.

My niece is an OR nurse. She suggested I avoid a firm catheter if I did CIC because it could lead to bleeding and I would not want to damage the urethra before having an intra-urethral procedure a few weeks later (I'm schedule for HoLEP in 6 weeks).

If my next PVR test is more in line with last summer (89 cc) than last week (389 cc), I probably won't pursue CIC.If I do go with CIC, I probably need to find a urologist who would show me or have his nurse show me.

I will look at the videos.

Very helpful comments here.

Many thanks,

Michael

Michael:

1. Urologist assistants don't always know how to use a bladder scanner correctly. I have my own bladder scanner. Last year, when I started having problems, I went to a new urologist and his assistant measured 0 mL 4 times using two different machines (because I didn't believe him). I told the uro what happened and he didn't believe it either. The uro then used the bladder scanner to get 68 mL, which is more in line with what I expected.
2. I suggest you start keeping a daily log of all of your urinations. Try to get an idea of what the average amount urinated per trip is during the daytime. Nighttime will be different as I'm sure you already know.
3. If you would like, I can PM you a link to a cheap device ($10) that you can buy on Amazon to get an idea of your maximum urine flowrate. It's the parameter urologists use to get an idea of the extent of bladder outlet obstruction (BOO); it's not the only parameter but it is a major one.
4. If you're unsure what to do at this time, you might consider taking dutasteride and alfuzosin. I know that many men hate these pills and you do need to be aware of side effects. But they have worked well for me for 1 year now. If they work for you, it might buy you more time to get a handle on your situation and decide what to do. I'm currently working on a plan to reduce dosages and will be visiting my uro in 2 weeks to get his buy-in/verification. The plan includes having quarterly blood tests for sex hormones (esp. DHT).
5. Have you had a 3T MRI? If so what were the results? Do you have an enlarged median lobe? Do you know how large your prostate is?

Wow, this is great. Thank you.

At Dr. Lingeman's office, a nurse measured my PVR. Today, my urologist's nurse practitioner did it. It was on a brand new device.

I don't understand how I could have retained almost 400 cc a week ago and my bladder was empty this morning.

I'll check PVR in two weeks.

I'll keep a urine log. I have something at home I can bring into the office to take measurements with.

I'll PM you, as I am interested in the device.

I have had four MRIs.All were 3T multi-parametric. The first two were with gadolinium contrast; the last two were not.

My first MRI had a PIRADs 3 lesion. I had a 16-core MRI-fusion biopsy, with four cores in the "lesion." My biopsy was negative. One core had some methylation. My ConfirmMDx gave me a 19% chance of low grade cancer and a 6% chance of Gleason 7 or higher cancer based on the one core with methylation.

My 4Kscore was 3%.

My latest MRIs (December 2017 and April 2019) showed prostate volumes of roughly 120 and 130 cc, respectively. So, it grew 10 cc in just over a year.

Dr Karamanian looked over my 12/17 MRI and said I have a "moderate median lobe." He estimated my prostate at around 132 cc and PVR at around 120 cc at the time.

My urologist is outstanding as a cancer researcher, and I have the utmost respect for him. I wish he did HoLEP. Dr. Lingeman is great at that procedure, but it's a long road trip for me and whoever is driving me home. And it's always good to have the doctor doing the procedure to be in your home town, easily accessible. Again, Dr. Lingeman is great but I don't live in Indiana.

I have a median lobe (for as much as I've read on PCa and BPH, I still don't understand "median lobe"), a very large prostate (somewhere around 130-140 cc), and chronic (and repeat) prostatitis. For the last 2 weeks my perineum has been burning. I thought my most recent PSA was going to shoot back up to around 10-11, but it was 5.6 - about the same as 5 months ago - even though my bottom is burning.

My PSA density is pretty low, far below 0.10. My % free PSA has always been > 25%, varying between 28% and 39% over a 4-year span.

If my PVR is not really in the 400 cc range and I am not facing true urinary retention, I might have time to try Finasteride or Dutasteride with Flomax and see if symptoms improve.

I did read on another thread where HoLEP can help with prostatitis too. Granted, that means RE but if I can pee like I'm 25 again and not have this perineal burning, I'd trade that for RE. And, to be able to sleep through the night would be amazing. It's been a decade since I got 8 hours sleep with no interruption.

I've never had a Urodynamics study. Isn't that a necessary test BEFORE undergoing any BPH procedure?

Thank you,

Michael

I forgot to mention that my last three 3T mpMRIs - all at the same institution (ranked in the top 12 hospitals in the U.S.) - showed no lesions.

My first MRI (at a different hospital) gave me a PIRADs 3.

The last three MRIs assigned no PIRADs score because none of them saw any lesions, and only noted BPH and inflammation.

Thanks Tom,

I do think Dr Lingeman is very good, and HoLEP in his skilled hands should give me relief. As we know, it's a difficult procedure to master. Dr Lingeman has done about 4000 procedures.

The 389 cc retention scared me. I immediately scheduled HoLEP for that reason.

This morning, I had a PVR re-check at my urologist's office. I urinated 900 cc overnight, getting up 3 times over a course of 7 hours. When I got to work, I urinated a little. I felt pretty dehydrated this morning because I didn't drink much liquid before rushing to work. The nurse got a urine sample from me (I could only pee around 30 cc). She measured my PVR today and it was 4 cc.

I'm having my PVR re-checked in two weeks.

I also have an inguinal hernia. My urologist is an expert in radical prostatectomy and also performs simple open prostatectomy.

My PSA, which was 11 last summer, came down to 5.1 and just bumped to 5.6 but my PHI score now gives me a 33% chance of cancer.

My PSA density is around 0.04. My % free PSA is around 31-32%.

Doc wants to do a repeat biopsy (I have a negative MRI-guided 16 core biopsy from 4 years ago pluse a 4Kscore of only 3%).

The nurse told me that my uro can do the hernia repair at the same time he does the simple prostatectomy. I have a small (grade 2) hernia now. And I have a mesh and plug from a prior hernia on the other side.

So, I am now debating that 2nd biopsy. I don't want to to that because my prostate is so big, over 130 cc.

Adding a hernia into the mix only makes all this more difficult.

I have a friend who had Greenlight (or PVP, I'm not sure which) about 3 years ago. He said once they took out the catheter (following day), he could urinate so forceably that he had to hold back because it was coming out too fast for his still healing urethra to handle.

If HoLEP can give me that kind of a result, I would dance for joy.

Thanks,

Michael

Thanks Hank,

My niece is a surgical nurse and a former ER nurse. She told me a firm catheter (coude, I think she said) could lead to bleeding, especially being inexperienced.

She said in the ER, nurses insert Foley's which are more flexible. She recommended I use a softer, more flexible catheter and have a uro or his nurse show me before doing it on my own.

I will send you Dr Lingeman's info.

Yes, he did tell me RE was almost certain.

I'm not so concerned over that. My wife and I are not intimate anyway and it's been that way for a long time. I think we've grown so far apart that we've both just learned to live without physical touch. I'm 61 and am not going to remarry and am never going to father children again, so RE is not a big deal.

The only thing that bothers me about RE is if I develop an infection, I cannot send a semen sample to a lab for a culture to ID the type(s) of bacteria.

I have chronic inflammation too (shows up on my MRIs), and HoLEP removes the adenomas but I don't know if it does anything for the prostatitis.

I don't think Rezum is for me (too much swelling and I don't want to wear a Foley for 2-6 weeks or however long). At 130+ cc, TURP is not an option. Greenlight perhaps, but HoLEP offers long-term advantages. HoLEP produces immediate gains in urine flow, and has that over PAE in the short-term, and from what I've read, better long-term results in terms of Qmax over PAE at 12-24 months.

If I am truly in urinary retention, I can't even try to shrink the prostate with Finasteride down to say 100 cc and then try Rezum as that would take 6-12 months.

I'll PM you shortly,

Michael

Michael, you have a great nurse. She was right on about soft vs stiff catheters. It's what I've been trying to tell others, with my 3 plus years of experience. HoLep redo rate is something of 1% after 20 years, proven. It's the best, imho.

Hank,

Haha, that nurse is my niece. She's pretty special. She was the lead ER nurse in a major hospital in a major US city. She's now a surgical nurse for one of nation's top 10 orthopedic surgical practices. She's got quite a few degrees. 😃

Dr Lingeman told me there's a < 0.5% chance I'd ever need another procedure if he did HoLEP. I'm now 61.

Thanks,

Michael

Hi. Could you tell me the name of the latex and plastic catheters ,you use? I/m have bleeding problems as well .i have been using cure catheters fr14 hydrophillic catheters ,for almost 3 years. i get a gross hematuria .I also use a coude tip of which i was told to use.Does the flow work as well with the latex catheter? This Cure catheter has a strong flow .I have to find an answer to my problem?

THANKS VERY MUCH

frank,

I'll send you a PM, as I don't know what the rules are on brand name recommendations.

Hi Frank

You say you have bleeding problems. Do you think they're caused from doing CIC?

I've been thinking about switching from speedicath coude tip to the Cure one's you've been using. But if they're making you bleed; maybe not. I'm looking for a good discussion on here about different catheters. Actually, I like the Coloplast speedicaths that I'm using but they're expensive. I'm not paying it out of pocket but my medigap insurance company is and I just want to do my part to keep costs down. Also, there must be a reason why so many of the catheter manufacturers are trying to use different materials other than latex.

Keith, I think in Frank's case, he will bleed no matter what catheters he used, now. He most likely started with Coloplast Speedicath and had bleeding first, like most of us here, unfortunately. Bleeding begets bleeding. If you keep on catherizing, especially with high frequency like Frank, bleeding will never go away, because the injury never had a chance to heal.

I used Sperdicath for 3 years and suffered frequent bleeding, was ready to go for Holep, 6 months ago. Then I decided to heed someone advice and try Cure. Now I am free of bleeding. I tried out different catheters and found out that many other softer would be as good, not just Cure.

Try Cure, you'll see why bleeding with Cure is very unlikely, unless you're really trying. I couldn't. 😀 I am now very bitter at Coloplast. They probably had fakers on this forum, pushing for their catheters, ending up doing to many people serious harm.

Good to hear from you Hank.

I'm not down on Coloplast. I like their product. I was using the speedicath 12fr straight tip, but because of raised PSA and I was under the impression that bumping the prostate on the way in can cause a raised PSA; I requested getting a coude tip instead and have been using it for several months.

I found that if I start out with the penis raised almost straight up and then lower it when encountering resistance it will just slide in easily. I think what I would like to do is go back to the straight because the coude IS a little bit scratchy sometimes and I don't think I really need it because the straight works for me. The straight is considerably less expensive to medicare also. My provider always wants to contact my Urologist in order to change from a straight to a coude tip.. they don't mind changing brands as long as I stay with the same kind of tip.

The thought occurred to me that some people may be pushing the speedicath on this forum but I really haven't seen any evidence of this. They are just better, to me, because they are stiffer and I can use a 12 rather than a 14 and still use the dive bomb method in which one can use one hand. So the sleeve that comes with some of these catheters seems useless to me and just get in the way. I should probably just stick with what is working because I don't think my medigap plan will raise my rates too much... I think they are required by medicare to keep these raises to a minimum and are reembursed by the government if they lose money. Don't quote me on that but I think that's the way it works.

I agree with you that coude is more scratchy, and more expensive. Coude also cause bleeding more easily if it's stiff. So I now only use straight. But some people prefer coude. I still use dive bomb method with Cure. I just don't usually use the sleeve.

So you use a Cure hydrophilic 12 fr? or a 14fr?. I have had several samples and with one of them the 12 was too flexable and I couldn't do it one-handed like I can with the Coloplast. It might have been a Gentlecath brand that was so soft.

I just ordered my next month's supply and ask them to go back to my straight catheter prescription. I like the little sticker on the back of the sleeve so that I can usually stick it up to the wall before getting my penis head ready to receive the catheter. That way I can grab the funnel part, pull it out of the sleeve being careful not to let it tough anything but air; and drop it right in. all using one hand on the catheter.

When I was on Speedicath, I used 12fr, and 10fr if I bled too much in the previous cath. Now with Cure, with no bleeding, I am able to use 14fr and 16fr. Yes, 12fr Cure might be too soft to use one hand approach.