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.
2 likes, 71 replies
JDinNC paul2228
Posted
my verdict is still out - more later
daCajun JDinNC
Posted
Hope you start healing and your results turn postive!!!
charles40613 JDinNC
Posted
JDinNC paul2228
Posted
julie76407 JDinNC
Posted
derek76 julie76407
Posted
RonTexan derek76
Posted
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
hungupdown paul2228
Posted
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).
RonTexan hungupdown
Posted
ronert01636 paul2228
Posted
"1 month ago, had PAE - done in Lisbon by prof. Pisco."
WHAT IS PAE?
hungupdown ronert01636
Posted
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.
derek76 hungupdown
Posted
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.
RonTexan derek76
Posted
derek76 RonTexan
Posted
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.
ronert01636 RonTexan
Posted
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...
RonTexan ronert01636
Posted
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 .