Testosterone, could this be causing me a problem

I hear you.  But it’s probably certain that us men who take drugs like tamsulosin (Flomax) do it out of absolute necessity.  

At some point I hope to undergo a procedure that eliminates dependence on any Rx meds.  

If you can urinate without meds, that’s wonderful. 

Michael 

Michael:

If you're going to stick with the meds, there are some things you can do to monitor your situation.  They might help in deciding when is the right time for a procedure and which procedure. The idea is to establish a baseline and monitor against that baseline.  If symptoms get much worse, seriously consider a procedure.  If they stay roughly the same - stay the course....

Most people cannot take all of the steps that I'm currently doing, but I'll list them in case you are interested (I probably only start spot checking soon).

1) Keep a voiding diary.  Once you get used to it, it hardly takes much time.  I work at home, so it's relatively easy for me.  For nighttime urinations, I use a small flashlight to write down the numbers (turning on the light can negatively impact your getting back to sleep).  It's amazing to me that at night I can urinate up to 350mL, but very rarely reach 200 mL during the daytime.

2) Buy a cheap device from Amazon ($11) which lets you estimate the maximum flowrate.  Several weeks back I created a post in this forum on this device.

3) Buy a bladder scanner to monitor PVR.  I paid $2,000 for mine, which is expensive.  I've struggled in the past with getting reproducible readings, but readings seem correct now.  It's provided me with invaluable information on how my body voids.There are times I'm nervous that I haven't peed in 4+ hours during the day and I'm worrying about urinary retention.  The scanner tells me though, that I have less than 150 mL in my bladder so the kidneys for some reason aren't producing.  Typically that means I'm going to urinate a lot of volume at night.  I'm now working on ways to shift urine production more to the daytime.  If I can accomplish that, I'll have alleviated a nighttime issue without a procedure (which procedure probably wouldn't have done the trick, because it is a kidney urine production issue not a bladder obstruction issue).

Jimjames has a blog post in this forum on portable bladder scanners.

4) Do you know your prostate size?  If you don't, it would probably be a good idea to get it measured. DON'T RELY ON THE DRE ESTIMATE.  It might be way off.  For years my old uro would write down 40 grams after a DRE.  I had it measured in August by transabdominal ultrasound (TAUS) and it was 145 grams!!.  I just about hit the roof.  I had it measured again by transrectal ultrasound, which is supposed to be more accurate than TAUS, and it was just under 100 grams.  There are a number of procedures that can't be done if the prostate is too large, so you probably should know how big it is.

rdemyan,

Wow, thank you - great info.  Much appreciated.

I sometimes monitor urine output.  It's usually 250-350 mL.  Highest output was 600 mL.  Sometimes I'll measure, wait several minutes and void another 50-80 mL.  Night time voiding is around 250 mL and about 350-400 mL upon waking.

I don't know why but all my life if I pee before a hot shower, I have to pee again once I'm out of the shower.  Not sure that's BPH as this was going on when I was young.

I had an ultrasound this year and last: PVR last year was 55 cc, was 85 cc this year.  That's so variable, as sometimes I just know I've emptied pretty well and other times I know I still need to go a lot.  Quite frustrating.

Prostate is growing.  Last year MRI: 120 cc.  This year US: 175 cc.  I understand variability in the imagining.  Either way, it's big.  LIke you, I was devastated to find out how large it was (and had grown).

Weighing options amongst HoLEP, PAE, FLA.  My wife is against the ones insurance does not cover - which is FLA for sure and I think PAE.  I think HoLEP is covered. 

But at some point it will be good to come off the meds. 

You're right about inaccuracy of DREs.  The doc can only feel one side (posterior, I think) of the gland and there's no way via DRE to tell if a median lobe protrudes into the bladder, etc.  Probably should just double or triple the DRE estimate, or simply ignore it.

Thanks for being helpful!

Michael

Hi Michael:

I wish I had your voiding numbers.  If you don't mind me asking, what exactly are the symptoms that are distressing you?  Is it the RE and loss of sexual interest?  The large size of the prostate?

The ultrasound scans are not as accurate as I would like.  I think medical staff use them primarily to get an idea of PVR (is a person less than 50 mL, between 50 and 100 mL and so on).  I generally take five scans at one time and most of the time wind up averaging the numbers. I found that the less urine in the bladder, the more variability (some readings of the five might be 50 and some 100).  However, my scanner allows me to look at the 12 images for each scan and also see how the software has tried to outline the bladder to determine the volume. When I review the scans, I often wind up tossing out specific readings because I can see that the software had a hard time outlining the bladder.

Also, the readings that I take at home are generally higher than what is read in the office.  The assistant for my new uro took bladder scan readings and came up with zero.  This happened with three measurements.  Then he went and wheeled in a different scanner and got zero again. I mentioned it to my uro that I didn't believe the number.  The uro then did the bladder scan and the result was 68 mL (which was about 20 minutes later).

Check out the jimjames thread, "Portable Bladder Scanners for Home Use".  Don't let my posts expressing frustration sway you if you want to buy one.  I was a researcher at one time in life, so I'm used to higher precision/reproducibility that a bladder scanner can provide.  I found my scanner on eBay and as you can read in the thread, negotiated hard to get the price down.  Now after having more experience with it, it's actually a good scanner.  I think part of the issue with having a scanner is that I don't feel comfortable asking for help on how to use it (because medical staff don't really think I should have one and because I suspect that some medical staff don't know how to use them correctly).

Also, I think you should buy the $11 device on Amazon for estimating your maximum flowrate.  Here's the thread I posted: "Simple, Inexpensive Device to Measure Maximum Flowrate".  If you are typically getting better than 15 mL/sec, and based on your good individual voids and decent PVR, you might be able to hang on until some of the new therapies are more proven or even newer therapies get approved (fexapotide triflutate, for example).  Of course only you can judge that.  

"so I'm used to higher precision/reproducibility that a bladder scanner can provide. " should be

"so I'm used to higher precision/reproducibility THAN a bladder scanner can provide."

My biggest issues are: (1) loss of sexual drive (how much is due to Flomax, how much to a big prostate is not known - both are culprits); (2) night time urination (good nights: get up to pee only once; bad nights: pee 3-4 times, rarely is it 5 times); (3) flow (without Flomax flow is weak); (4) sometimes at night, I have to stand in shower and lean against shower wall, half awake, and it takes 7-8 minutes to pee - and I'm up again an hour later, but those are rare, thank God; (5) I cannot sit for > 5 minutes (burning in perineum, pressure, pain), although with pelvic floor therapy, this has increased to 10-15 minutes; (6) discoloration in semen almost 3 years AFTER biopsy.

My 2015 biopsy started a worsening of symptoms.  I've never had so much burning before, and my prostate has grown a lot after the biopsy.  I'm sure I got an infection from it.

My PSA before the biopsy topped at 4.3 - since the biopsy it's jumped from 6 to 10 to over 11 to 8.5.

My doc (a different urologist) wanted to do a 2nd biopsy, but with my large prostate and the bad effects of the first one, I did not have it done.

He said my 4Kscore was low risk for cancer.  Going to check PSA, free PSA in four weeks.

I am guessing I have prostatitis with the BPH.  My doc won't treat prostatitis w/ antibiotics - says it could lead to Cipro-resistant bacteria and if I need another biopsy that could be dangerous.

I did have a question on testosterone supplementation.  Once a guy takes T supplements, is it true his body no longer produces T naturally and he is stuck for life having to supplement?

My wife and I are distant and there's not even holding hands, but if things ever changed (doubtful but it's remotely possible), I don't want to rely on Cialis.  I figure boost T levels and libido should increase even while on Flomax.  Intuitively, that makes sense.

Have you tried maca to improve T levels or libido?  Something a guy in a health store mentioned to me.

Thank you,

Michael

1) With respect to nighttime urination is it getting up a number of times with little produced?  Are you drinking alcohol close to bed time?

2) I've recently had episodes where it has been difficult to start urination and this happens only at night.  I was talking with someone in another thread and we both agreed that walking around even marching to vigourously move the legs helped alot in getting the flow started.  The downside is that it wakes you up but he and I agreed it is better than the alternative.

3) Have you tried a prostate relief cushion?  I use cushions to make sure that my perineum (pelvic floor) is not touching the chair.  I have a couple manufactured by Allman.  Even with the Allman, I place it on top of two narrow cushions (the cylindrical ones that you see on beds) and I can feel air space below my pelvic floor.  

I also just bought one for traveling.  It folds in half and I plan to take it with me to restaurants, etc.  It's manufactured by Sojoy and I bought it on Amazon.  Haven't really tested it yet.  I do wish all of these cushions were thicker, but they are much better than simply sitting on a chair.

4) Strange thing about my prostate size is that my PSA is relatively low (around 3.0).  Prostate density is low.

I did have a 7.8 PSA in January.  I badgered my old uro into prescribing antibiotics because I was pretty sure it was prostatitis.  He prescribed Cipro, but I had him change it to amoxycillin (read about it as an alternative in a prostatitis forum).  It's not as good as Cipro, but my PSA went back down to 3.0.  My free PSA was very good. DRE was good.  I also had him do a PCA-3 test and that came back good.  My health plan doesn't offer 4Kscore.  Google PCA-3.

I know virtually nothing about the effects of testosterone on men with our condition.  I do want to have my sex hormones tested, but my GP refuses to conduct the tests.  I'm going to do it on my own though.

Consider the alfuzosin.  You can get a 30 day supply so that if it doesn't help, you're not out much.

Michael:

One last thing.  I assume you are aware that you can't take certain decongestants if you have BPH (sudafed, etc.).  Since flomax and even alfuzosin exacerbate congestion, I'm wondering if you do use decongestants. If you are using them, even occassionally at night, this could easily be the reason why you have periods where you can't get the urine stream started.  I have a thread on this as well.

Thanks, yeah I know about decongestants.  I don't usually get sick in the winter but when I do, it's treat the symptoms:  steam my face, hot showers, lots of tea, chicken soup, cough drops, Vicks Vapo rub, etc.   I haven't taken Nyquil or Sudafed, etc. in years.

My problem on bad nights is getting up every 1-2 hours to pee.  I think I drink too much water when I get home from work.  If I take melatonin and drink less after dinner, the nights are better.

I drive in my car with a seat donut.  At work I stand using a lift for my keyboard and monitor.  I'm pretty beat at the end of the day from standing, but I just cannot sit.

I had the MiPS test (University of Michigan) and that included PCA3.  My PCA3 was 20.

My PSA density is < 0.05.  It should be < 0.10, so that's good.  % free PSA is at 28% but was once 39% then dropped to 26%. Still, it's over 25%, which is where it should be for PSA between 4 and 10.

I'm going to ask my uro about Alfuzosin.

I talked to one doc who does FLA and he told me I would not need Flomax is I had FLA done.  He read my MRIs and he's not concerned that my prostate is as big as it is.  He thinks he can fix my flow issues.   If money were no object I'd do the FLA.   I need to figure some things out and that's probably a year or two away.  But the hope is to have something done and be meds-free.

Good suggestion about walking around in the middle of the night to help get urine flow going. I read that on this forum too in the past.  I wonder if cutting back on salt intake might help too as sodium results in fluid retention.  In any case, the dynamics are surely different at night than during the day.

Michael