Possible BPH, looking for advice

Posted , 37 users are following.

Hi there. I'm 30 years old, and for the past 6 or 7 years I've been having problems when urinating. It first manifested as recurring non-specific urinary tract infections (which I'm told were the early symptoms of a bladder neck obstruction, probably caused by an enlarged prostate) which eventually settled into a long standing problem where it basically takes a very long time to finish. I'll feel as though I've emptied my bladder but if I wait long enough, more comes out (despite having no real sensation of still needing to go). I've found a couple of ways of encouraging further flow but it's still long-winded. If I get up and leave the bathroom too early I get dribbling, sometimes quite bad. It makes being intimate with my girlfriend kind of awkward because immediately after going to the bathroom I don't really want to risk her feeling anything.

I've tried both alfusozin. At first it worked great, but eventually the effectiveness wore off and all it did was give me massive headaches. I then moved over to tamulosin which again...wasn't terribly effective and resulted in retrograde ejaculation. Now I'm on Saw Palmetto which is reasonably effective but seems to wear off quite quickly. I basically have to choose at which time of the day I can afford to be in the toilet for 30-60 minutes.

So I guess my question is if there are any foods I should stay away from, or any other triggers that I might be able to address to get this under control? I don't drink. I'm a social smoker. Maybe 5 days out of the month. Apart from being partial to a good cup of tea/coffee I don't partake in any other substances.

Really desperate for some advice here. I recently cancelled an operation that I was scheduled for on the grounds that I was quoted a 50% chance of success, and the possibility of incontinence and re-constructive surgery if it goes wrong. Not what I want to be putting up with at 30!

Sorry for the long post. I'd be massively grateful for any help anyone can offer.

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  • Posted

    OK, well here goes - had my Urolift Wed Oct 22nd, general anesth, took 45 min, put in two clips, doc took pics that appear to show before and after with a clear path, p*issed blood for a day, pain for a few days and still uncomft to sit for long, but have been p*ssing every 30-45 minutes for a week now, doc say will take up to 2 weeks to see the expected improvement as prostate swelling goes down, I'm frustrated that my symptoms are worse post op than before, up 6x at night....

    my verdict is still out  - more later

     

    • Posted

      Please continue to post your results and if things are getting better for you.  There are several doctors in Texas, which is the closest to my location that perform the Urolift procedure.  I am 60 years old and have been pondering this as a hopeful solution. 

      Hope you start healing and your results turn postive!!! 

    • Posted

      Hi,I've recently started a thread just on Urolift and patient views and outcomes. I'm hoping we could get all comment in one place on this issue alone just to help others. I think you've posted once on my Charles40613 thread, thanks, I'm hoping you will continue to do so. It seems both of us are at similar stages on this treatment, I'm certainly interested in your progress v mine!
  • Posted

    thanks Paul, am now 2 wks post op - no more pain when I go, still up 3x per nt and every hour during the day, still waiting for the dramatic results - so far nothing really improved from pre-op, doc says takes 2-3 weeks so I'll stay optimistic and keep updating, good luck!

     

    • Posted

      Wondering how you are doing following your surgery as my husband is considering this procedure.  Any info would be appreciated!
    • Posted

      Has you husband looked at the laser procedures, HoLep, Green Light PVP, Thulium Laser?
    • Posted

      Hi, I just want to add to Julie that I believe the consensus of posters would be that Holep is far superior to any of the other laser procedures when it comes to patient satisfaction with the result.

      According to hungupdown who posted 23 days ago, his experience with PAE certainly bears investigating. I would like to hear more about it.

       

      My best to all BPH sufferers. 

      Ron 

  • Posted

    I was diagnosed with BPH recently, aged 59,  but had suffered need for frequent urination for maybe 30 year . and retrograde ejaculation for a year.

     1 month ago, had PAE - done in Lisbon by prof. Pisco.

    Improvement amazingly started immediatly after the procedure. After  about two hours went to utinate and there was already a big difference. Since then things just got better ( see other posts).   PAE seems to have no risks of incontiance or sexual disfunction( the opposite in my case).

    • Posted

      Hungup, I know a bit about PAE but you should know more, tell us about how PAE is done, other results you are aware of and what has transpired in the last 23 days.  There are thousands of BPH sufferers in the english-speaking word and many of them may benefit. Thanks, Ron
  • Posted

    hungupanddown:You say

    "1 month ago, had PAE - done in Lisbon by prof. Pisco."

    WHAT IS PAE?

    • Posted

      Sorry I missed the questions posted, getting bombarded with so many notifications from this site!

      Anyway, PAE is Prostate Artery Embolism, basic plan is reduce bloodflow to the Prostate which then shrinks.

      Embolism is done by inserting a cathater into the artery to the point to be blocked, then feeding in PVA beads via the catheter. These beads dissolve after about 6 months, but the blood flow will stop permanently. This is done with arteries on both sides of the Prostate, I'd expected 2 incisions but only one was needed. They did the left side by going up the right artery to to the junction, then back down the left side.

      Prof Pisco developed the procedure about 4 year ago, I believe the first patient was a colleague who persuaded Prof Pisco to do it.

      St. Louis Hospital also does uterine fibroid embolisation, which has been around for around 20 years so wel tested. Was told that Prof. Pisco has done around 20,000 embolisms, just over 700 have been the PAE procedure. The procedure for both is very similar, main difference is the target.

      Before being accepted for the procedure you have to first send in results from a few tests and fill in IPSS and IEEF forms. A trans-rectal ultrasound (TRUS), shows the Prostate size and shape.

      PAE is aimed at patients with BPH, rather than Prostate cancer. A prostate biopsy is suggested to 'eliminate' cancer, but I'd already declined this when suggested by NHS. The biopsy can cause sexual dysfunction or infections, the samples taken may easily miss any cancer and interpretion of microscope observations is very hit and miss. Experts say they often return the result 'atypical' when they're not sure, knowing the ensuing harm done following a false positive.

      Prof Pisco was happy to proceed without the biopsy, digital rectal examination and the TRUS image both indicated the prostate was healthy.

      In Lisbon they do about 7 patients each Thursday, you have a CT scan done on the Tuesday then see Prof Pisco on Wednesday to discuss the scan. The scan shows the Prostate arteries in 3D, if the arteries are 'tortuous' (very finely divided) then PAE is less likely to be a success. This problem is more likely if you smoke or are older (over 80ish).

      On the day you are given a mild sedative, a small maybe 5mm incision is made and a catheter needle / sleeve inserted in the artery to the side of the groin.

      You are transferred to the radiographers table, this allows them to see the catheter placement. During the procedure a 'contrast medium' is injected via the catheter. This gives a very warm feeling but as it spread up my body I felt quite woozy for about 5 minutes. This was the only uncomfortable part of the procedure. I could feel when catheters were being moved around inside, this just felt strange.

      When finished the catheter needle was removed and a nurse applied pressure for a minute, then stuck on a bandage.

      The whole procedure usually takes about an hour, I was maybe 90 minutes as they couldn't get the regular fatheter round an acute bend and had to use a special one for the very first time.

      You need to lie down most of the time for the rest of the day. After 2 hours I went to the toile, already a big flow improvement, I guess because the prostate was no longer being inflated so much. I was 2nd paitient that morning and left about 5pm. Got a taxi back to hotel in Lisbon, if your staying far off you would be kept in overnight.

      They said the procedure was a success, embolism was achieved on both sides. If only one side is sucessfull you might get some benifits, though never as good.

      Told it's good to walk around the next day, but not to drive tfor 2 days. Prof Pisco likes to stay around for a few days, in case of any rare side effects he would see you straight away.

      Common side effects are blood in urine or semen. After 3 weeks I started getting blood coloured semen, dark one day but then clear after 10 days.

      I had an initial Prostate size of 163ml (average adult male is 30); retained urine volume 200ml; PSA 5.6 and needed the toilet about 5 times a night. I also suffered retrograde ejaculation, which was not comfortable, despite coming off Tamulosin for the last 10 months.

      Retested at 1 month, now: size 136ml (17% reduction) 2.5ml retained; PSA 3.6. Now 2 months, sometimes 1 toilet visit at night but mostly go right through. No longer have retrograde ejaculation, still not brilliant but much better, also clear which means little or nothing coming from testes.

      If there's no improvement after 12 months, they offer to repeat the procedure for just the materials cost, providing your arteries are suitable (not tortuous).

      I was a bit concerned about a couple of points that wern't explained. One was how does the Prostate manage, is some reduced bloodflow left? What happens with all the material that dissapears? I just went in thinking - well no ones died from PAE yet!

      I've had great result so far, now it's 2 months and prostate shrinkage is meant to mostly happen over 6 months. So hoping a TRUS scan then shows further improvement.

      My prostate was 163ml - very large, people can have bad problems with much smaller sizes - from 40ml. The shape is a factor, an enlarged central lobe causes more problems as it presses on the urethra. This might influence the benefits PAE might bring.

      I've read that some of the other treatments can't be done on a prostate that's over about 100ml, not sure why (removal of offcuts?) or which treatments but think TURP was mentioned. Over 100ml and you were maybe looking at more invasive methods.

      Hope that covers what you wanted.

    • Posted

      I had two negative prostate biopsies and had an infection after each one that required six weeks of antibiotics to clear up. I have not heard of biopsies causing sexual dysfunction.

      My prostate was 125grams when I had Thulium Laser surgery in England in 2013. In America it is a fairly new procedure but has been around here for quite a few years.

    • Posted

      My feelings exactly about any procedure, they are plain dangerous and minimally invasive or not can cause great harm if not done by experts in the best possible facilities.  
    • Posted

      My surgeon had been doing Thulim Laser for more than six years and has demonstrated it around the world. When I mentioned one I had watched on You Tube he snorted 'That was nothing it was only 45 grams'

      He complained about the size if mine by saying that I had given him a bad back as he had been crouched between my legs for so long.  

    • Posted

      I am adressing this primarily to Ron Texan since he seems to be very well-informed as well as  articulate but  I hope others with relevant information or experience will respond too.

      What about the much touted Avodart and Proscar?Is it still being prescribed by urologists or has it been abandoned as being ineffective? I asked my urologist to give it to me but he dismissed it suggested that i should have surgery... I am now on rapoflo which is mildly effective...

    • Posted

      Hi ronert, I believe those drugs are still being prescribed. I took a combination drug, Jalyn, before my Holep surgery. That's the last  possible drug before some sort of surgery must be done. You can google all three and see that they have adverse effects on your sex life. If you wish to stay sexually active you had best stay away from all of them. 

      I believe you said that you had a turp eight years ago and it's no longer effective. Probably the prostate has grown back again. That's what they do..

      There's no doubt in my mind what i would do in your case. I would research PAE as extensively as possible and if it lookded right I would have that done.  If I had any reservation whatsoever I would find the closest HOlep surgeon and have that done as i did in october and the result was unbelievable, just perfect. If you simply cannot have surgery then I would learn to self-cath, actually i would do that anyway, just in case. But there would be a Holep in my future eventually, without any reservation.

      Don't expect your urologist to agree, he won't, as he doesn't do that procedure.

      Best of luck but stay off the meds, that's my advice.

      Ron  . 

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