BPH several procedures NONE worked
Posted , 13 users are following.
May 2018 had a Urolilft in Toronto at a cost of $17,000 That worked for about a year.
More and more Acute Urinary Retention (visits to emerg screaming in pain, hours waiting for a catheter) from December 2019 on, then finally a Turp February 2020. 6 weeks later, and several
attempts of trying to pee without a catheter all end with failure and more screaming pain.
Starting to feel suicidal and just wanting to give up.
Modern urology seems less of an exact science and more of 'lets try this or let's try that'.
I'm 64, in great shape and just retired.
0 likes, 47 replies
Howard31850 ScotsCanuck
Posted
r 've been through your ordeal as well and have been self-cathing for 4 years while waiting for a miracle cure.
If you live near Toronto you might try to get a referral to Dr. Kal Potler at St. Joseph's hospital in London Ontario. He specializes in a robotic simple prostatectomies which remove the entire prostate without major surgery.
The procedure is covered by OHIP. I have a consultation with him next month on the advice of my local urologist who has referred 3 other men to him over the past 2 years. I've spoken with 2 of them and they really praise the results. One man is 64 and the other is 70.
I don't mind doing CIC for the rest of my life but it would be nice to be free of this problem.
Another procedure to consider is HOLEP which is also done in Toronto and covered by OHIP. There is also Greenlight Laser in Toronto.
Sometimes I find that small doses of prednisone help me a lot (5mg every other day). But that should only be done under your doctor's ok.
Don't despair! You have many good options at little cost to you. Good luck.
Howard
HowieF ScotsCanuck
Posted
I know that its not always possible, depending on insurance, but have you tried getting a second opinion? I've had BPH (negative biopsy over a year ago) and have had "urgent" urination that I now think was caused by bladder spasms more than the BPH. My urologist was monitoring the situation through DRE, biopsy, PSA and bladder retention exams. It wasn't until I passed a kidney stone in October, 2019 that I went into full (100%) retention and started in with Foley catheters in November of 2019. Finally had TURP on January 22, 2020. It's worked, so far, but healing is VERY slow. I still have some burning pain when I urinate as well as frequent but fast urination, but that might be more of a bladder issue than a prostate one. At 6 weeks, post-TURP, my uro did a cystoscopy to not just look around, but also to try and knock off some of the blood clots and remove scar tissue. The pain-to-benefit ratio was too high so I was just told that I have a LOT of blood clots and the prostate surface still needed a LOT of healing. However, I was done with catheters 5 days following the TURP. Your URO should at least suggest a cystoscopy to determine what is wrong if you still have 100% retention. As I said, you may want to consider a second opinion.
ScotsCanuck
Edited
Well heard from the urologist today, wants me in Friday to do another cystoscopy.
Thank you all for the helpful comments. I tried the self catheterization thing, just ended up filling the toilet and my hands with blood over and over and not releasing any urine. Gave up on that thought.
My urologist is the head guy for my city, so I'm hoping he finds something this friday.
I suspect though with covid 19 I will have to wait until that eases. On the news even cancer patients are not getting surgery due to the covid 19 pressure on our health system.
pluff_mud ScotsCanuck
Edited
My first couple of attempts ended up the same way. I switched catheters and have had no problems since. Did someone show you how to do CIC? There are hundreds of different catheters out there of varying sizes, materials and tips. Find the one that works best for you. I have found that the straight tip catheters made of soft plastic or latex work best for me. If the ER can insert a catheter without injuring you, you should be able to do it too.
rdemyan ScotsCanuck
Posted
Scots:
As an alternative to CIC, you might want to discuss suprapubic catheterisation. My only knowledge is that it exists and a senior nurse told me that if the hospital staff are unsuccessful in inserting a catheter in the urethra, then a suprapubic catheter is often the next step. If you're interested, I suggest googling the subject and discussing it with your doctor in your upcoming office visit. Good luck.
derek76 rdemyan
Posted
I would not recommend a tube stuck into my bladder and carrying a bag around.
When I had heart surgery in 2012 I warned them that I had a prostate infection in case they didn't want to do it until it cleared up. They said it was OK but in the operating theatre they could not get a catheter in and used a supra pubic one. They left it in for my seven day stay. I was shackled carrying the bag and another one draining fluid from my chest plus a stand putting liquid into me around.
My father in law who was too weak for surgery had a stent fitted to allow him to pee. It later had to be removed as it became clogged up with lime scale.
tom86211 ScotsCanuck
Edited
Modern urology seems less of an exact science and more of 'lets try this or let's try that'.
I would agree - this area is not an exact science. Have been on this forum for many years and it's full of accounts of procedures that worked great for some and didn't work for others. CIC works great for some, but in my case, didn't work - terrible pain. You might also consider a simple prostatectomy. I would also go for a second or third opinion until you find a urologist who can tell you why you are still blocked. I have been to the ER in terrible pain completely blocked so I understand what you went through.
derek76 tom86211
Posted
Modern urology now has too many options and it often seems that what a Uro does is the best one for him rather than the patient.
HowieF derek76
Posted
I personally thinks it can work both ways. Many of these techniques involve an outlay of money so some smaller Urology departments may not have ALL of the equipment for ALL of the procedures. Also, any given urologist or urology office may "specialize" in one technique or the other. I don't know if I'd want a uro that is a "jack of all trades". If my uro has done 10,000 TURPs but only 3 UroLifts, I may want to go with a TURP if I have to use that URO. Incidentally, my URO was going overseas for three weeks at the time I was scheduling my TURP so I had a choice of waiting for him to come back, or having someone else in the office do the procedure. Due to my issues with Foley catheters, I opted for the other urologist, who later told me that he actually performed MORE of the TURP procedures than my regular urologist anyway. So, I guess what I'm saying is that, if a URO has done a kazillion of one procedure but not too many of the other procedures, it probably would be in my interest for him to select the procedure he does the most of. But the key is still to discuss alternatives with the urologist. For example, if I was not happy with incontinence, then I would want to avoid partial or total removal of the prostate (especially if cancer was not an issue). If I didn't want to do Kegel exercises, than that limits things too. And if my bladder (rather than prostate) has me urgently going to the bathroom every 10-15 minutes, I don't think CIC would be a good choice, not to mention the ICH factor. So, discussing things with the urologist as to what you are willing to go through or not is an important step in narrowing down the procedure he will use. I know that I discussed a lot of these things with my urologist even though he was leaning toward TURP as what he is comfortable doing and HIS comfort, is also my comfort. I wouldn't want a grouchy urologist working on me...
derek76 HowieF
Posted
When I had my GL at an NHS hospital in Newcastle England in 2004 the team of four were doing trials of it.
My uro was the most junior of the team and I was only his eighth patient. He did though impress me more than any of the four I had been to elsewhere. They were very keen to do bladder neck sparing procedures and I was fortunate that my lateral lobes were the problem rather than the median lobe of my 75 grm. prostate. Perhaps they were selecting the most suitable cases for good results but I had no problem with a train journey on day two and I went to the races on day three without dashing to a toilet when I got off the bus and spent a comfortable afternoon and had two large coffees.
They still do Gl in some cases but HoLep is now their preferred procedure.
When My prostate regrew to 135 grms I had Thulium/Holmium laser surgery that was just as successful but a longer recovery time as I bled more having been on Warfarin and left with a catheter in. That surgeon in a different part of the country was enraged when I mentioned my previous GL calling it a commercial procedure and not a cure !I did not ask him why.
HowieF derek76
Posted
Thanks, Derek. As you pointed out, there is something to urologists using their "preferred procedure" and the important thing is the communication. I'm OK with the TURP that I had but I wish that I would be healing faster. I haven't even passed a decent sized blood clot in weeks but the last cystoscopy showed that I still have a lot in there and I can do without the burning pain. I was on a Foley catheter for 5 days following the surgery but I had gone through a few FAILED void tests in the months before and, living alone at the moment, they were airing on the side of caution.
ScotsCanuck derek76
Posted
Newcastle eh ? My mom was a geordie... high heaton
thanks for the input.
derek76 ScotsCanuck
Posted
Lovely friendly people there. I nearly went to live there once as the Company I worked for in London in 1970 took advantage of government grants to relocate there. A few trips to look at houses during the winter as much as anything put me off.
One area we looked at was called Wideopen, how well named it was.
When we lived in Edinburgh I had three trips there to see the Uro but also used to go there to National Hunt Racing in the winter and it was always bitterly cold. Much colder than Edinburgh also on the East Coast.
HowieF derek76
Posted
In my research on "TURP", I realized that the SKILL needed isn't actually going through the prostate with the white-hot electrode. It's making sure they STOP exactly at the end of the prostate so they don't burn their way into the neck of the bladder (where the nerves are) or the pelvic floor muscle so that I wind up in a diaper for the rest of my life. I personally think that is the most important part. But that's just my opinion. So, having a urologist that has done a lot of the procedures was important to me. You don't want to hear "ooops!" during the surgery.
derek76 HowieF
Edited
That is why I feel that GL and HoLep are much more precise. I thought that if he had done a lot of TURPs that GL would be easier. When my prostate started to regrow I had an appointment with Tim Larner who was one of the first two UK urologists to do GL. He said that at first we thought it was an easy procedure but we soon realised that we needed to take more care. At that time he said that I could hang on a bit longer. By then of course he had the second generation laser.
In the end I heard of this local surgeon who had been doing Thulium/Holmium laser for some years and demonstrating it around the world.