The Urolift procedure; patient views and questions

Thanks Ozchilly. I'm no medical person but  understand your medical interpretation of my layman's description. I'll continue to research via Google etc. Fascinating stuff. I kind of think it's the sort of discussion I'm hoping a urologist might raise but I'm beginning to realise there is so much unknown territory here and not least expertise and training. Just one thing at the moment what is LETS ?

I think he meant LUTS (lower urinary tract infection)

That should've read LUTS (lower urinary tract symptoms)

@Ozchilly: "...unfortunately when (increased ADH nightime secretion) is overridden chronically by a patient with LETS, the body gets the message that the ADH surge in the evening isn't required and bingo, a vicious feedback cycle becomes established."

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Hi Ozchilly,

This is an interesting topic, but do you have any studies to back up that the increased ADH nighttime secretions are overriden by a patient with LUTS (lower urinary tract symptons), or is this just a theory based on what happened with your wife? Same question regarding the way you treated the condition by holding back urination.

I have done a brief search of the literature, and there is an association between nocturia (waking up during the night to urinate) and LUTS. This makes sense because many of us with LUTS have retention issues and therefore only empty our bladder incompletely.

That said, I think what we're talking about her is not nocturia, but "nocturnal polyuria", where it's not just frequency that is increased, but where nightime urine output is also increased and that could be caused by lack of ADH as I understand it.

I believe noctural polyuria is sometimes treated with desmopressin,

but again, haven't heard or read anything about the condition having to do with LUTS per say, nor able to find anything about how to correct diminished ADH production without desmopressin.

Not saying you're not correct, just trying to figure out if this is just a theory based on the anecdotal evidence you've mentioned or if there are some studies out there that we could read and learn more about the topic.

Personally, I also tend to urinate more let's say from 5PM to 9AM, then during the daytime. Not sure if this is technically noctural polyuria or not, but a definite switch from years ago when i urinated more during the day. I asked my urologist about this and his response was that everyone has their own cycles. Not much help there but that may be part of it.

Richard

Oops, LUTS, not LETS as pointed out. Brain freeze.... My apologies.

I don't have studies specifically with regard to LUTS and ADH.

This abstract is interesting, didn't pursue the full article:

http://www.ncbi.nlm.nih.gov/pubmed/1997638

My bold type...

What came first, the chicken or the egg? Are they able to avoid nocturia because of a high ADH, or is the high ADH as a result of them avoiding the negative feedback cycle by ensuring that they don't get up at night as a priority?

This small trial - duplicated in another trial with a few more subjects - may support my position indirectly:

Article

http://www.ncbi.nlm.nih.gov/pubmed/10369169

Here is the link for the second trial:

http://dx.doi.org/10.1016/S0003-9993(97)90155-6[show] Article Info

I was basing my post on normal physiology and my anecdotal case, though in my defence, I did receive positive reports from a few patients in my General Practice when I was still doing it some years ago with whom I discussed my understanding and anecdotal experience of the physiology. 

Cheers.

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Thanks for the articles. Nothing wrong with basing theories on normal physiology and anecdotal cases. I just wasn't sure what the basis of your theory was.

Richard

There's two reasons for getting up at night. The first in incomplete emptying of the bladder. The kidneys keep topping off the bladder and the person needs to keep urinating.

I agree with your assessment of ADH. In fact many doctors are now prescribing ADH for seniors with nocturia. I had my LUTS taken care of with a GL laser and a Bladder neck resection a year later. Both were restricting my urine flow and causing retention. But for the past 6 months I have had really bad nocturia about 8 nights a month. This sporadic nature would seem to rule out most things like coffee, food, drink, exercise, etc. which doesn't change much from day to day. On my bad nights I get up 10 to 15 times in 7 hours and pass about 2-1/2 liters, and get no sleeep. On the rest of the nights I get up anywhere from zero to 5 or 6 times and pass anywhere from zero to 1000cc, but get right back to sleep and get a good 7 hours of sleep. My PVR was tested at only 7cc and my urologist said he can't help me as they only deal with obstructions or infections. I've asked my regular doctor for a trial of desmopressin but she insisted I see a nephrologist and cardiologist first, which I will be doing over the next month or so. Your experiment of refusing to get up raises a good point. Does the act of getting up increase the production of urine? I'm not sure it does, but it seems getting up often results in the inability to sleep and being awake would certainly cause anxiety which would increase urine production.

I'll be very interested to find out how you do once you are able to access the Desmopressin, Bob. I'm still convinced that getting up frequently interrupts the feedback cycle that encourages the body to produce ADH. I don't believe that the Desmopressin will, of itself, increase the ADH secretion long-term, as the level in the bloodstream is likely to have a negative feedback effect on endogenous production of ADH, but it may well help to identify the issue a bit better. Good luck in getting someone to buy into it and provide the Des for you.

Ozchilly,

Thanks for your reply. My next appointments are in mid and late April, but I'll follow up my post when I know something. In the meantime I will follow your lead and see if holding my water and getting up less will reverse the trend. Des either works or it doesn't so if I get it, I'll know within a week or so if it works. One felow posted on the ic-network that des solved ghis problem completely, going from several times up at night for years to sleeping the night every night for the previous 10 months. But he never responded to my posts or follow up questions. It seems like medicine is a very much do it yourself project for people who can't get answers from their doctors.

Best of luck with finding a solution for your LUTS.

Bob

Ozchilly,

I still get updates from this thread and I thought I'd provide an update of my own. I wasn't a candidate for urolift because of a massive prostate and middle lobe protruding into my bladder, but follow these posts with interest.

Since my turp in April which was prompted by hematuria, followed by a second surgery to stop the bleeding, I've been to a cardiologist and a kidney specialist to try to find some help with my nocturia. Neither one, nor previously my GP or urologist, would give me a prescription for desmopressin. I thought this rather odd because it either works or it doesn't, and a week's supply would have answered the question. Also odd because it's routinely prescribed for children for bed wetting. Apparently 4 surgeries with anasthetic in 4 years is considered safe, but a week's worth of des was too much of a risk for all these medical people.

To recap, after 2 GL's and a standard turp, my stream is fine, I'm urinating larger volumes (200-300cc's), but my nocturia remains. I'm going for a checkup next month and will have a sonogram to check my PVR, but I suspect there's no blockage or retention.

My nocturia is of a strange sort. Since I use a bedside urinal and void in the dark, I generally get back to sleep almost immediately after a void. Also I often wake up on the hour for several hours into my sleep whether I have to pee or not, but I just note the time and go back to sleep almost immediately.

The strange part of my nocturia is that on many nights I have a very large volume of urine and so get up every half hour or more often and about 2 to 3 liters total until 6 or 7 or 8 in the morning. The following night I will only get up once or twice with a small total quantity.

I keep a journal which I fill out in the morning. Here's the total nightly quantities (measured in my urinals - I keep two by my bed) for the past two weeks in cc's. 950, 1850, 650, 850, 3000, 420, 3300, 250, 1875, 975, 2600, 500, 2100, 350.

Since I go about 250-300cc per void, anything over 1800 represents getting up 6 or more times, basically a lost night's sleep.

The cause is still a mystery and I think is likely to remain one. There's no correlation with what I eat or drink as far as I can tell. On the bad nights I porbably void more than I took in for the previous day. On good nights, it's far less. There's some mechanism (either mental and/or physical) that just creates and expels more urine on some nights than others. I basically have learned to accept it and live with it, which at least has given me peace of mind regarding this annoying condition.

Luckily for me, I'm retired, so I have the luxury of getting to sleep at 6AM to 8AM after a bad night and sleeping until noon. Also using the urinals allows me to sleep a full 8 hours on the nights when I do get up 2 to 5 times and get right back to sleep.

I noticed that about half the posters in this thread didn't have the results they wanted with the urolift. Probably not a lot different than posters for every other type of procedure. 

Bob

Hi Bob,

Did you ever play around with the sodium in your diet as we once discussed? As I mentioned, if I have a high sodium meal I notice that my urine output will decrease afterwards (water retention) however if I eat normally the next day the urine output will increase about double making up for what was retained. To test this on yourself, you would probably want to go on a relatively low sodium diet for about a week -- say 1500mg -- and see if it makes any difference. Understand that most sodium is not table salt but "hidden" in foods, especially processed foods, so it takes a little research but not much. 

While not nearly as bad as yours, my nightly output for some time was at least 1000cc which meant at least 4 trips to the bathroom. Lately, this has decreased to only one trip at night but not sure why.

Other than the sodium,  one thought is that I have been taking afternoon naps. An afternoon nap puts you in the prone position during the day and therefore can stimulate urine production just like the prone position at night might do. It also might have changed my internal clock with a later bed time. 

So, if I go to bed at 1AM, I will usually wake up at 5:30 or so to the bathroom, and then go back to sleep until around 9. 

Again, I'm just guessing at what changed with me, but I think changing things up, be it diet, bed time, etc., is worth trying. 

Jim

Hi Jim,

Honestly I didn't change my diet. Whatever function that is supposed to suppress urine production and concentrate the volume at night doesn't work for me. I'll have normal nights (up 3-5 times and passing a liter +- 400cc) most of the time, and nights when I pass 2-3 liters occasionally, and am up to 6 or 8 in the morning before going to sleep until noon. There's no rhyme or reason. My kidney specialist said things loosen up at night when you are older, and what comes in must go out, but had no clue as to the sporadic nature of it. My cardiologist said pretty much the same. I have done my best with the bedside urinal of just learning to live with it.  One thing I have done recently is to have a couple of glasses of wine before bed. That does seem to help me sleep sounder. I get to sleep anywhere from 1AM to 3AM. Even though I still get up to void, it's more of a blur to me and I sleep very soundly in the morning from about 6AM to 9:45 AM or so.

Bob

Sounds like things are starting to work out better but have you ever done a void diary with time and amounts of each void, also logging how much fluid you take in and what time? If you haven't, it might give you some useful information. 

You will probably find out that what goes in does go out (less perspiration) but the patterns might be interesting. Also, unless you exercise a lot, if you're drinking more than 6-8 glasses of fluid a day (counting coffee, wine, etc,) then cutting back also may help the nocturia. 

As to the sodium thing, it won't alter the "in/out" equation but it might even it out which might make it easier on you. Also, cutting back on sodium also cuts down on thirst and you drink less.

Jim

Hi JimJames,

Yes I kept a void diary including daily input and day and night voids and amounts for about 6 weeks which I presented on a spreadsheet to my GP and kidney specialist. They had no comment on it. I now just enter the amount in my bedside urinals when I empty them each morning. Bear in mind my daily exercise, diet and input vary very little, but the outputs are quite sporadic. The only consistency is that after a bad night I'll usually (but not always) have little output the next day and night. Here's the last 30 days of night time voids in cc's.

2200, 1650, 1150, 850, 250, 250, 1075, 975, 650, 950, 1000, 775, 1075, 950, 1850, 650, 850, 3000, 420, 3300, 250, 1875, 975, 2600, 500, 2100, 350, 850, 1000, 1300.

My strategy has been to minimize the inconvenience and forget about it during the day. 

Bob

 

One other thing is that a few years ago I thought I might have Interstitial Cystitis. My Mom had it. It's rare in men but possible. For a year I followed the IC diet. Every time I had a bad night I tried to remember what I ate and drank that day and eliminated it from my diet. After a year I was down 20 lbs. but no better. I went back to eating and drinking whatever I wanted. I gained back the 20 lbs and the nocturia was still unchanged. I came to the conclusion,which I still hold, that whtever is causing the nocturia has very little to do with my diet or habits, and is due to some metabolic or biological or mental disorder. The main thing is I can live with it. It's only a minor inconvenience for a retired person of 69. So many people I know have it much worse.

Bob