PAE - Has anyone had success?

Posted , 21 users are following.

After doing some research, PAE seems like a good starting point with minimal risk. But so many on this forum seem to have poor results. Does anyone have success with PAE? I tried to search "PAE" on this forum and the search results do not work well, so I decided to start a new post.

Thank you, John

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  • Posted

    Hi John. I was set on pae. Consultant said it takes 6 weeks due to initial radiology survey, then the procedure and the later scan to see the results. Also be said it was only 70% successful. He recommended UROLIFT as it was virtualy an instant fix so that's what i did.

    The procedure took 10 minutes with 3 implants and minimal pain and the urethra was totally cleared. However, the urination process didn't imorove much as my bladder was trabeculated ( lost elasticity) due to pushing pee past prostate constriction for the previous 3 years. I therefore wonder if any of the prostate fixes will be satisfactory if the person's bladder is unable to expand and contract as normal.

    I would recommend asking the urologist about the state of the bladder during the cystoscopy and what outcome he expects.

    Good luck, Geoff

  • Posted

    I'm a total success of PAE. Had a 120 g bleeding prostate. Terrible nocturia, 3 full retentions, traveled with a pack of catheters, which didn't help much. Had to go to bathroom every hour or even more often. I wrote more than 50 posts here. Read them....CIC IS GOOD ONLY FORVTHOSE WHO TOTALLY LOST ELASTICITY OF THEIR BLADDER WALL. They still risk full retention at older age an increasing obstruction. IT's playing with fire for mo obvious reason. IT WILL END UP WITH OBSTRUCTION AND INCONTINENCE. PAE SUCCESS DEPENDS MOSTLY ON THE OPERATING IR AND HIS TRAINING. PICK A GOOD ONE AND HE WILL CURE YOU. IT MIGHT LAST ONLY A FEW YEARS, but can be repeated. RADIATION DOSE IS INSIGNIFICANT IN COMPARISON TO WHAT PATIENTS GET DURING THE RADIATION THERAPY AND WILL INCREASE YOU CHANCE OF LIFETIME CANCER FROM 52% to 52.5% at our age of BPH

    SUCCESS US MUCH HIGHER THAN 70%

    • Posted

      Gene,

      I think I know where you got your lifetime cancer risk increase of 0.5% from. I found a site which calculated increase in lifetime risk based on single radiation doses from various medical procedures. You probably found the same site (this forum does not permit insertion of URLs).

      I'm not a TURP-proponent or HoLEP-proponent, nor am I anti-PAE. I'm just here looking for the best advice on making a decision - and I find more help here on this forum than in talking with doctors because here we find real men who are going through the same ordeals.

      I found one report that said mean exposure to the patient during PAE is 2420 mGy. That is a lot of radiation, although there are likely nuances between exposure and absorbed dose that I must look further into, and one has to understand how to use the units (rads, roentgen, Gy, Sv) and it can be confusing.

      Epidemiological studies have shown human LD 50/30 to be 5000 mGy for full body exposure. (LD 50/30 is the dose that would kill 50% of the exposed population in 30 days.)

      I've read another study that indicated exposure during PAE is 47 mSv. The conversion from Gy to Sv appears to be 1:1, but I need to look into this further. (I do recall reading PAE results in 90 mSv, but have not been able to find that source in a very quick search moments ago.)

      I don't think we can assume 2420 mGy exposure correlates to 2420 mSv. That would be an enormous amount of radiation.

      I've also read that the increased lifetime cancer risk is 0.004% per mSv. So, if PAE exposes a man to 47 mSv, his lifetime risk increases by only 0.19%. This is a small risk. If 1 mSv = 1 mGy, then lifetime risk increase is 9.7% (0.004%/mSv * 2420 mSv = 9.7%), which is a significant increase of 18.7% (from 52% to 61.7%). This, intuitively, simply seems far too high.

      Comparing PAE to other medical procedures: hand x-ray (0.001 mSv); dental x-ray (0.005 mSv); chest x-ray (0.1 mSv); angiogram (12 mSv); CT abdomen w/o contrast (10 mSv): PET/CT scan (25 mSv). Normal background radiation for 1 year = 1 mSv.

      Before going with PAE, I'd want the IR to tell me what my exposure will be (I'd expect him to provide a range based on surgery time) and from that, what my increased lifetime cancer risk would be. I do believe it is much lower than the above.

      Michael

  • Posted

    Hi John,

    The vast majority of men who have had PAE had good outcomes. This is in the medical literature and is why so many have tried it. I have had 3 PAE's. The last one two weeks ago. After each procedure I had some relief but no enough to get off the Flomax. I'm hoping this one will make that possible. Had I not had the procedures, I would be permanently catheterized by now. My prostate had shrunken significantly and no longer blocks the urethra which for most men would have solved the problem. I think I may have other issues that are not related to a blocked urethra, and that's what I trying to determine. In my opinion, the PAE procedure is well known now and has a very high success rate with little or no side effects and rapid recovery. The other procedures are much more destructive and invasive. I think that PAE is a good first option before letting some urologist hollow out your prostate like a walnut with a hot wire or laser or steam or microwaves whatever other thing they come up with. Best of luck to you.

    Bruce

    • Posted

      Did insurance pay for all three PAE procedures ? Were your issues not fully investigated prior to your first PAE to determine what was needed and if that was the best procedure for you ?

    • Posted

      Yes. Insurance did pay for it. My issues were investigated over 30 years with no resolution except suggesting a TURP. I was 25 years old and woke up one day with great difficulty peeing. Saw my first urologist. None of the drugs had a lasting effect. I had two complete urodynamics tests, two cystoscopies a cat scan, a meotodomy and the next try was to be a turp. Let's all face it, Urologist don't know what causes LUTS. The just throw drugs at it, hollow out the prostate and hope for the best. By the time I hit my late 50s It had become much worse. Since PAE became available in 2014 and was less destructive than turp, I saw it as the next best troubleshooting step. Iv'e has two more cystosopies and each one showed reduced blockage of the urethra and it has helped but not enough to get off the Flowmax yet.

    • Posted

      John,

      How large was your prostate prior to your first PAE and how large is it now (realizing your third procedure was only done two weeks ago, you probably don't have a current measurement post-PAE)?

      Were you able to reduce your Flomax dosage - say from 0.8 mg to 0.4 mg or from daily to every other day as a result of the first two PAEs?

      Do you have a large median lobe?

      I understand the attractiveness of PAE over intra-urethral options and over simple prostatectomy. Your apparent disapproval of these alternate methods seems to come through clearly in your second to last sentence.

      In my case, I am facing a time crunch. I'm 60, have a prostate that's 130 cc and has grown 10 cc since last year and 40 cc since 2016. With Flomax, I can void and I sometimes pee 350-450 cc and feel as though I emptied. There are also nights when it takes 10+ minutes to pee and I know I have not emptied and am up an hour later to dribble out more. Sometimes during the day my urine hits the bowl with a pretty forceful stream. It's all over the map. The bad nights are what concern me.

      I'm looking to switch jobs. I also need hernia surgery. With my current employer I have job safety - and plenty of leave time to recover from prostate and hernia surgeries. If I switch jobs in August, I will have to travel much more than in my present position. I have a variable height desk now and I stand all day. In a new position, I may be required to sit for long periods, which is difficult due to the size of my prostate.

      I feel pressure to get a "fast fix." I don't have the luxury of time to get PAE. Yes, it could have dramatic results in two weeks or it could take a year and a repeat procedure to effect any significant improvement in LUTS and QoL.

      I don't want to do a more invasive procedure, but HoLEP in the right hands does offer substantial reduction in prostate size and improvement in Qmax and PVR immediately - and it also offers sustained long-term benefits on par with the much more invasive open prostatectomy.

      My urologist now is one of the five best prostate surgeons in the world. But going through a simple prostatectomy is a major deal. HoLEP can get me there with much less down time. And I have to get cut twice in that case: once for the prostatectomy and once for the hernia. I'm not 30 years old with incredible recuperative powers. Going under the knife twice at 60 will be tough.

      If PAE could ensure amazing results in a couple of days - like HoLEP - I'd be all over that. But I can't switch jobs and then take off from my new job six months later to undergo a more invasive procedure if PAE doesn't work immediately.

      A lot of factors go into these decisions.

      Michael

    • Posted

      " In a new position, I may be required to sit for long periods, which is difficult due to the size of my prostate "

      Why ? My prostate was 135grms and I never had a problem sitting ?

    • Posted

      Derek,

      I don't know the answer to that. I've benefited from pelvic floor physical therapy. Prior to PVPT, I could not sit for 5 minutes. The pressure, burning and pain in my perineum, and the sensation of "sitting on a wet golf ball" were too much. In meetings I would squirm constantly, and then have to stand. I could not get through a sermon at church (in the Evangelical churches I attend, pastors preach 35-50 minutes), and I'd have to often stand in the back of the church.

      I had to get a variable height desk at work.

      Following PVPT, I can now sit for 15-30 minutes with less discomfort, and sometimes 45 minutes. I can now drive 30-40 miles whereas I had limited driving prior to that.

      Each man is different. Some guys with prostates of 50 cc (50 grams) go into full urinary retention while other guys with prostates of 250 cc continue to empty their bladders (granted, with the help of Flomax or Rapaflo or Cialis, etc.). If I knew how to explain all of this, I'd write a book, sell it for $15 and make a killing on royalties, given how many men in the US and UK suffer with BPH.

      I still stand at work, just to keep the pressure off my prostate, even though I now know who to relax by pelvic floor muscles. I've been at work over 8 hours now and have sat in my chair a total of 10 minutes.

      Michael

    • Posted

      Presumably as you don't mention it you are all right laying down in bed. Did your urologist not have any suggestions to the problem.

    • Posted

      Derek,

      Yes, you are correct....no problem laying down.

      Although I can sit longer, I try to avoid sitting for 20 minutes or more when possible.

      My doctor didn't suggest anything or offer an explanation. Acupuncture and sitz baths helped a little. A friend mentioned pelvic floor therapy and I asked my internist to refer me to PT. A year later I feel better but I cannot sit the way I once could.

      Many of my problems happened after my biopsy. When my PSA hit 11 last summer my Uro wanted to biopsy but I would not do it. Fortunately, my PSA came down to 5.2 and my MRI was clean. I did take a gamble.

    • Posted

      I should clarify: my biopsy in 2016. It found no cancer and no PIN (pre cancer) but I had complications and my PSA has never gone down to pre-biopsy levels.

  • Posted

    i had pae 5 weels ago and see no real improvement but mus wait 6 months or longer to evaluate im hoping for some improvement as my prostrate was only about 48 we shall see must fine a IR THAT DONE MANY

  • Posted

    Hi Gene97713,

    You are the only success story? maybe more will come forward?

    I can't find any of your 50 posts on the topic. A search of your username only goes back 5 weeks and a search of PAE is about the same.

    Please post the link or elaborate more on your story. Thanks,

    • Posted

      JOHN, click on my name. I HAVE ACTUALLY 160 posts on this site fighting proponents of TURP AND CIC.

    • Posted

      JOHN,

      below is the copy if recent medical review of the procedure. DECIDE FOR YOURSELF. MY DATA IS EXACTLY AS DESCRIBED IN THIS REVIEW AND BOBCATS EXPERIENCE. IDENTICAL TO DETAILS.

      2018;361:k2338Expert's summary:In this open-label, randomised clinical trial (RCT) the authors compared the efficacy and safety of prostatic artery embolisation (PAE; n=48) and transurethral resection of the prostate (TURP; n=51). The primary endpoint was improvement in International Prostate Symptom Score (IPSS) at 12 wk. The mean IPSS reduction at 12 wk was 9.2 points for PAE and 10.8 points for TURP (noninferiority for PAE not shown; p=0.17). No differences between the two study arms were observed for IPSS-quality-of-life, Chronic Prostatitis Symptom Index, and International Index of Erectile Function (IIEF) scores. Marked differences were observed for objective parameters such as maximum flow rate (Qmax) at 12 wk (PAE 13.0ml/s, TURP 22.5ml/s; p<0.001), postvoid residual (PVR) volume (PAE 70ml, TURP 34ml; p=0.003), prostate-specific antigen (PAE 2.3 ng/ml, TURP 1.3 ng/ml), prostate volume (PAE 41ml, TURP 27ml; p<0.001), and the degree of obstruction (shift towards less obstructive category: PAE 56%, TURP 93%; p=0.003). Fewer adverse events occurred after PAE (n=36) than after TURP (n=70; p=0.003). The authors concluded that the symptomatic improvement after PAE is comparable to that after TURP at 3 mo. PAE is associated with fewer side effects yet has disadvantages regarding functional outcomes, which should be considered when selecting patients.Expert's comments: The author has nothing to disclose.

    • Posted

      Whoa! Why don't you include the COMPLETE study where the same author's conclude that due to lack of long term data, at this point PAE has to be considered experimental and should not be performed outside of clinical trials! I will post a link to the complete study in a separate post because any linked studies will take a day or two to clear moderation.

      I've been away from the forum for a while but a few observations. The last time here the flavor of the month was FLA, driven by a few individuals who had reportedly great outcomes. Before that Rezum. And before that Urolift. Now it appears PAE is the new flavor again driven by a few short term good outcomes.

      My suggestion regarding PAE, or any of these procedures, is to consider anecdotal stories, what they are, anecdotal. But if you're going to base a decision at least in part on anecdotals, go back and read ALL the threads and stories on PAE and you will find many not so great outcomes.

      Jim

    • Posted

      Complete PAE study that was previously posted omitting the author's conclusions that PAE is experimental and at this time should not be performed outside of clinical trials.

      Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

    • Posted

      Gene,

      There's no question PAE offers less perioperative and post-operative complications than TURP -or any other BPH treatment option out there.

      I've read the results of one study that compared TURP and PAE for key parameters, including those you mention (PVR, Qmax, prostate volume, IPSS), at 6 and 12 months.

      Out of the gate, TURP out-performs PAE. Even the figures you cite above - which I'll address below - favor TURP at 3 months. Other procedures, such as HoLEP, match or exceed TURP in the short-term and have long-term results to fall back on.

      This is not to shy anyone away from PAE. I'm still considering it.

      However, at 12 weeks, TURP (which I don't favor) when compared to PAE offers a 73% improvement in Qmax; a 106% reduction in PVR; a 43% decrease in total PSA; and a 34% reduction in prostate volume. To me, PAE is not running neck-and-neck with TURP at 12 weeks; it's getting whipped pretty good.

      On the plus side, PAE will virtually ensure RE can be avoided while 75% - 80% of TURP patients will be left with irreversible RE.

      Also, TURP has bleeding for up to several weeks, requires a catheter (usually, very short-term) and runs other risks such as UTIs and strictures. PAE has virtually no risks by comparison, other than the radiation dose, which I have read is anywhere from 50 mSv to 90 mSv. That is no small dose but the risk of soft tissue cancer (prostate, bladder, pancreas) 10-15 years down the road from the procedure is relatively small and for men over 65 suffering from BPH/LUTS, is probably well worth the risk. It becomes a tougher decision for a guy who's only 50-55.

      I did speak to one of the nation's top IRs for PAE. I think his "overly enthusiastic" approach actually turned me off. He said I will have great results within two weeks. Yes, I've read of men who claim their lives changed two days after PAE, but while these anecdotal reports are great to read, they are likely anomalous.

      For every guy who had dramatic results in two days, I've read of two guys who've had multiple PAEs. This only underscores the reality that no two prostates are alike, and what works for one man will fail for another, and vice versa.

      Mayo-Rochester considers PAE experimental, although it is being done there as well as the other two urological giants, Johns Hopkins and Cleveland Clinic. I wish there were more published reports from these institutions, as they are the top urology centers in the world.

      There was a report from circa 2016 that claimed a 73% success rate for PAE at 3-7 years. If that is typical, those figures are encouraging. If that 73% figure holds at 10-15 years, even better, but we'll have to wait and see if that's so.

      Michael

    • Posted

      Jim,

      FIRST IF ALL YOUR INFORMATION IS OUTDATED. STANFORD U, WHERE MY IR WAS TENURED RECENTLY, CLOSED PAE ClINICAL STUDY 2 years ago due to pending approval by FDA. PAE WAS APPROVED BY FDA IN JULY 2018 and is not experimental anymore. IT's covered by NIH IN UK, where medicine is socilized. ALSO IN PORTUGAL,, SPAIN, and many other DEVELOPED countries. IN SOME SUBJECTS LASTS UP TO 7 years, as long as TURP OR ELSE. SUCCESS RATE US VERY HIGH ON SUBJECTS WITH LARGE PROSTATE AND WHEN PERFECTED PAR IS PERFORMED. I COPIED FROM INTERNET THE WHOLE ABSTRACT OF THE PAPER WITHOUT REDUCTIONS, DO YOU CLAIM ABOUT ME HIDING ANYTHING IS BASELESS. BY NOW THERE THOUSANDS IF PATIENTS AROUND THE WORLD WHO UNDERWENT SUCCESSFUL PAE and are more than happy with their QOl and improved sexual performance. COMPLICATIONS ARE EXTREMELY RARE AND EASY TO FIX OR GO AWAY NATURALLY. ARE YOU AN URO ADVERTISING TURP? ANY LESS INVASIVE TREATMENT IS BETTER THAN LESS SUCCESSFUL TURP LEAVING THE PATIENT IMPOTENT OR INCONTINENT, which are plenty on this forum. DON't understand you point. ELABORATE, please. ARE YOU AGAINST LESS INVASIVE TREATMENTS?

    • Posted

      Every year now we get a couple of new 'cures' In the UK the NHS preferred option

      has changed with the wind and is now supposedly Rezum presumably as it is the cheapest although TURP is evidently far from dead. Actually it is not so long ago that a poster questioned if TURP was still being done anywhere.

    • Posted

      John,

      There should be a lot of PAE success stories, and not just Gene. I'm not sure how many guys who've had successful PAE visit this forum. It would be encouraging to all of us to hear from them.

      And there are plenty of FLA, HoLEP, TURP and Rezum success stories.

      And for each of the above, a lot of less than ideal results.

      I also know of guys who've had high Gleason score cancers, underwent radical prostatectomies and today are cancer-free and pee with no problem, and who still have sexual function.

      Michael

    • Posted

      Gene,

      Though your response was directed to JimJames, I also posted that Mayo considers PAE experimental. In that case, my source could have been from prior to mid-2018.

      You're right in that complications from PAE are rare, and it's the least invasive procedure of them all.

      From all I've read, there has been no study tracking men beyond 7 years. I suppose, if it gave good results for 7 years and needed to be repeated every 7 years, given the fact it is hardly invasive, that would not be a bad way to manage BPH. A lot of men repeat TURP within 5-10 years.

      For long-term, if not life-time, assurance of doing a "one and done" procedure, a man is probably looking at simple prostatectomy. It's major surgery but with a good surgeon, it would never need to be repeated. (I'm not suggesting anyone rush into major surgery, however.)

      Michael

    • Posted

      Gene,

      Let's keep this simple. You posted PART of a study but you failed to post the conclusion of the study. I just paraphased the conclusion of the same study you posted. That is all I did. As soon as my second post comes out of moderation, anyone can read the ENTIRE study and then judge it for themselves. Again, to paraphase what the study concluded -- PAE is not yet ready for prime time because very little data on duration. Gene, this is not my opinion, it is the opinion of the author of the study that YOU posted.

      Jim

    • Posted

      Derek,

      Remember when "TUNA" was the less-invasive darling of procedures? Don't hear much about it now because the results didn't last. I'm all in favor of less invasive options for BPH but let's get our facts straight before we make decisions. How many here went into REZUM, for example, being told there was no chance of retro ejaculation, only to end up with retro ejaculation. Just one of many examples where people only get truly informed about a procedure when it's too late.

      Jim

    • Posted

      I've lost count of the number of new cures in the past twenty years but still they do TURP.

    • Posted

      Jim and Michael,

      Instead of writing two responses, I will write one, because we all on the same discussion thread. I totally agree with all Michael's assessments and comments to PAE topic. 7 years durability is pretty decent. According to some URO anecdotal evidence President Reagan had three TURPs in his lifetime. I assume he was treated by the best Urologists the country can offer, I personally read about a couple of cases of early experimental PAE, when it lasted 10 years. PAE for BPH came as an extension of similar treatment of female uterine fibroid, which is successfully practiced by IR during last 20 years. Some females even had healthy pregnancies after such procedure. Some had complications with placenta.

      Jim, I repeat, I just copied an abstract of the review from the internet. I didn't cut anything from it. Yes, I do have the full paper circa 2016 and read it all. I was familiar with it's conclusions before going for PAE at UCSD. It was under auspices of NIH clinical study for 25 participants. I was #13 in this study. It was March 2018. There were plenty after me and I'm not aware of any failures. Professor who performed PAE is now moved to Stanford and the clinical study is concluded after FDA approval in July 2018. Kaiser Permanente , which is the largest HMO in US and is not known to be generous for covering experimental procedures routinely covers PAE now. (read some posts here from Kaiser patients). I insist that you data is outdated. PAE became a standard in many countries for patients of old age and prostate larger than 60 g. It has lesser side effects and complications. It's very challenging technically, requires 10 or more years of IR training to make it right. Not for every Radiologist, not for every patient. I hope that in time AI and less intensive radiation exposure required for PAE will make it ubiquitous. Again, probably not for every patient. I read more than 30 papers before rejecting the offer of TURP by my URO who predicted that I will lose my erections, make a mess of my rectum and my testicles will shrink after PAE. When 1 month after PAE I came to him to make some measurements, which he refused, my PSA dropped from 4.5 to 1.2, PVR was zero, and stream rate was 18 ml/s. He said I'm enjoying the placebo effect and predicted complication later in my life. You doing roughly the same thing, Jim, in a much milder form, while I am trying to spread the word of the mouth that PAE can be successful and should be used, when appropriate before any procedure that makes me think about the butcher shop.

      Last issue, which is not a joke, definitely. Plenty of radiation exposure during PAE. Including the required special contrast angiogram CT of prostate arteries before the procedure, which by itself bares 13 mSv of radiation and roughly 60 mSv of radiation exposure during PAE is a lot for a prospective cancers of abdominal area, including such nasty ones as small intestinal and pancreatic. cancer. The total exposure is roughly equal to the lifetime exposure to natural sources, albeit people in Ecuador are exposed to 5 times that naturally without any negative consequences. IR doctors are exposed to much more during their career. Regarding equivalency between 1 Gy (Grey) and 1 Sv (Sivert). It's complicated. The first is energy deposited by gamma radiation in J/kg, second is a biological effect of the same for other radiations, including X-rays. It's true that lethal dose of gamma (or X-ray) radiation is 450-500 rem or 4-5 Gy. The above cited number of 2400 mGy is wrong. It's 2400mGy*cm, which is a different unit to measure exposure. It corresponds to 30 mSv. At age 70 the risk of a getting a cancer in lifetime due to PAE increases by 0.5% from 52% to 52.5 %. Such is the nature of statistics. Of course for 10000 patients it will mean 200 more lethal cancers., but for a single person roughly the probability to win in scratch lotto. 😃. I hope I addressed all the issue debated so hotly on this forum. Sorry for some dry scientific numbers required for explanation of the radiation exposure during PAE.

    • Posted

      Gene,

      I appreciate your detailed reply (and it was not dry by any means, but I like numbers).

      My figures were from a brief paper by Brown Univ med student Rei Mitsuyama for the Society of Interventional Radiologists.

      He reports a dose-area product (DAP) of 450.7 +/- 182.7 Gy*cm^2.

      Also, mean peak skin dose (PSD) of 2420.3 Gy.

      It would require a lot more study on my part to make sense of all this.

      I do agree with you that the lifetime risk of cancer per individual is low in going from 52.0% to 52.5%, and certainly the older a man is, the more his decision should lean toward relieving his symptoms and saving his bladder than fear of soft tissue cancer down the road. Younger men will typically have longer lifespans, and so the decision is a little more difficult.

      In 20 years, we may see (if patients are followed that long) increased cancers in PAE patients. Then again, these men may have experienced improvements in quality of life that warrant any cancer risk. And a man who does nothing and suffers year after year from interrupted sleep due to nocturia is running a risk of heart attack much more than the 0.5% increase in risk of cancer.

      What I appreciate about this forum is the cumulative knowledge here and the way guys are willing to share with other guys to help in any way.

      Michael

    • Posted

      Michael,

      You mentioned nocturia - I had a PAE then a couple of months ago a bipolar TURP, and now can almost empty my bladder on the first try, then completely empty it with a couple of additional trips to the toilet, BUT, the nocturia continues with no improvement. I am still getting up 6-7x per night, and sometimes more. I am so used to getting up at night that I can't seem to sleep more than about an hour to hour and a half at a time, then I wake up, even though my bladder doesn't have much in it. The other possible reason for this is that a had radiation for prostate cancer five years ago and this may be having an effect on my bladder that is making it super sensitive to any urine in it. My urologist says they are doing botox injections into the bladder for this but that procedure absolutely doesn't appeal to me. I have said here before that getting sleep is very, very important, and getting up multiple times per night just ruins one's quality of life. I have tried taking naps in the afternoon but that triggers bad headaches. Had a very rough night last night, so this is fresh on my mind.

      Tom

    • Posted

      Tom,

      Can I offer a few suggestions that might help reduce your nightly visits to the bathroom?

      1. stop any liquid intake 3 hours before bedtime
      2. even if you don't feel like you need to pee, empty your bladder before going to bed
      3. take 10 mg melatonin 10 minutes before bedtime (with minimal water)
      4. you can work up to 20 mg of melatonin
      5. talk to your general internist or uro about an Rx that reduces bladder activity-sensitivity

      Getting up that many times is not good for your health, Tom. You body needs REM sleep and you may not be getting enough with that kind of sleep pattern.

      Michael

      PS - your PAE was not successful? how long after PAE did you have TURP?

    • Posted

      Michael,

      I weigh myself a couple of hours before bed to make sure I'm not dehydrated. I try to go to bed weighing about the same every night and that can mean having some water.

      I always empty my bladder as much as possible before going to bed, and during the many trips to the bathroom at night. Doesn't seem to matter. I just wake up anyway.

      I have tried melatonin and I feed very drugged out taking it. I may start a small amount again to see if it helps. My previous experience was that even 1mg makes me feel very heavily drugged.

      I took trospium to calm the bladder - didn't help. I may start this again to see if it helps now.

      I get a lot of REM sleep - it's the deep sleep that I don't get. In the hour to hour and a half that I sleep I am always dreaming.

      I had my PAE in Aug of 2017, and the TURP two months ago. The PAE was "slightly" helpful, but only lasted about a year. Off Flomax, then had to start up on 1 Flomax, then two to survive during the six months pre TURP. The TURP has really helped my flow, but hasn't helped my sleep at all. I may have to go to a sleep specialist for this issue.

      Thanks for the advice,

      Tom

    • Posted

      Let me tell you what I do. One of the drugs I take for high blood pressure is the diuretic, Lasix 20 mg. I take it once a day. It's amazing at making me pee. So if I don't have any plans in the evening, I take Lasix around 5pm. By 11, when I generally go to sleep, I'm all peed out. Cut's my nocturia from 4 or 5 times to 1.

    • Posted

      They give Lasix to racehorses to prevent lung bleeding from exertion

      Is it good for you to be dehydrated overnight ?

    • Posted

      Jerry,

      Well, that's interesting. However, before bed my bladder is completely empty (now, after the TURP), but during the night my kidneys keep making urine and I don't think the issue is my bladder having too much urine, it's that my bladder is super sensitive. And, I may have been getting up so many times per night in the past couple of years that this is just a very bad habit. I just don't know at this point what is causing this maddening nocturia. After the TURP and recent lack of PVR I thought the sleep situation would improve. I am just totally sympathetic to all here who are going through their various issues - just want to pee, go to bed, get a good night's sleep and wake up in the morning feeling OK - like I did for the first 70 years of my life!

      Tom

    • Posted

      Tom, Did I say bladder? No I didn't. The Lasix gets fluid out of the whole body. Out of your edematous legs, ankles, as well as the rest of your body, where you don't know there's extra fluid. It dehydrates you a little, and I get much less nocturia.

    • Posted

      Jerry,

      My wife's mother was trying to cut back on water in the evening so she didn't have to go to the bathroom as often during the night. She became dehydrated and collapsed - spent a couple of days in the hospital. Now that it's summer my wife is concerned about my hydration, so she wants me to drink more water, not less. I am just trying to maintain normal hydration levels, as I have my entire life. Never had a nocturia issue this bad until the last year, so maybe my bladder has become super sensitive. I drink very little water overnight, but the bladder sensitivity and short sleep segments continue all night. Anyway, always appreciate any ideas. Thank you.

      Tom

    • Posted

      Tom,

      Seems like you've tried a lot of things and you appear to know more on this subject than I do.

      If you're concerned about dehydration, can't you ensure consumption of enough water during the day?

      I understand the "drowzy hangover" from melatonin. It's real.

      Since this thread is about prostate artery embolization, perhaps you should start a new thread on nocturia or nocturia following TURP. That might draw a lot of attention from men dealing with that issue, and moreso than what you're getting here.

      My other advice is to consider alternative treatments such as dietary changes, natural supplements and perhaps even traditional Chinese medicine (TCM).

      Purely anectodal, but the last several days I have not had any coffee, and have limited liquid intake 2-3 hours before bed. I've taken 10 mg melatonin before bed. Where I ordinarily awaken 2-5 times a night, last night and Monday night I only woke up once, at 4:30 am each night, to pee. The only alcohol I drink is I'll have a glass or two of red wine a couple of times a week - no beer or hard liquor. I haven't had a glass of wine in 4-5 days. If you drink alcohol or coffee, maybe give that up for a week or two and see if there's any nighttime improvement.

      If you start a new thread I'll look for it. I'm sure there are guys on the forum who've found relief from a similar situation. This forum is just teeming with good advice.

      Wish you the best, Tom.

      Michael

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