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.
Have you learned clean intermittent self catheterization (CIC)? It is stories like yours that keep me from pursuing other options. I am a few years older than you, and I have been doing CIC for nearly three years. it has become second nature. My uro can't guarantee any surgical remedy would end in a better result.
my my euro is terrific in Chicago. If you feel like taking a trip here I can highly recommend him.
And And yes CIC is a savior. first It will help give you relief while you figure it out. second it means you'll never have to go to the ER for an emergency capth. And three it'll help when you need to recover from whatever surgery they're going to want to put you on a catheter but you won't need to
I had FLA for BPH with Dr.Karamanian, with excellent results, you can read about my experience in another thread below
I'm with pluffmud! I am going on 6 months of CIC after having over 5 liters of bloody urine drained in the ER after a spill from my bicycle. The uro gives a 20-30% success rate for any procedure at this point so I'm ready to give CIC a long-term try at rehabbing my bladder enough to walk away from catheters at some point without any intrusive surgical procedures as others here have done.
I have become habituated to CIC and it is a non-issue for me and is as routine as flossing my teeth and takes less time. Especially with your history, I highly recommend you give it a try. You can do a search here for more info.
Good Luck!
Patrick
Yes. You should absolutely learn CIC. Knowing that you can handle emergency situations without having to go to the ER will greatly ease your mind.
Best of luck.
Hi Andrew.
ScotsCanuck has already had a TURP 6 weeks ago. If the TURP isn't providing at least some relief, then doesn't it seem likely that his problem now might be with his bladder? If that's the case, it doesn't seem likely to me that another procedure for the prostate will help. Of course, I am assuming that the uro didn't botch the TURP.
Also, if I understand FLA correctly, the urethra is left intact; but TURP destroys the section of the urethra that goes through the prostate. I'm not sure if this is an issue now for an FLA performed after a TURP (although I guess the prostate now is the "ersatz" urethra so maybe it isn't an issue at all).
Do you see some reason why another procedure at this stage would be helpful? Thanks.
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
Hi RDEMYAN, you making good points, but the best advise someone can get is to contact Dr.Karamanian, or any other FLA practitioner, they all do FLA for BPH and ask, cost nothing for consultation, I have a friend who had GL, uros are saying urethra/rostate is clear, but he has some problems, had botox injection for overactive bladder, so far not much improvements, and uros don't offer him much help. Clean intermittent self catheterization (CIC) would be a good short term solution but longer term I wouldn't be satisfied, that is why I went for FLA, so far with great results, hope this last for few years.
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.
My issue is more with the bladder than the prostate. I am supposed to see my uro for a 6 month check mid April, but I suspect that will be canceled. So far my bladder hasn't rehabbed.
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.
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.
I have learned here that the key to rehabbing your bladder is to keep your PVRs (post void residual) to less than 400 ml. This is easy to measure while doing CIC.
Patrick
Here is another suggestion for you. I learned to CIC from the Continence nurse provided by CCAC in Toronto ( Community Care Access Center). They make home visits and have all the necessary supplies. The service is also free. You can phone them and arrange a home visit. The phone number is 416-217-1414. You do not need a referral from your doctor. There is no need for you to bleed from self-cathing. It is all in the technique and once you learn it is easier than brushing your teeth. But there is a lot to learn.
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.
Are you saying that retaining 300 ml. will rehab a bladder ? I was retaining 400 ml. prior to GL in 2004 and less than 50ml.after the procedure. When my prostate regrew to 135 grms by 2013 I was retaining about 300ml. I then had Thulium/Holmium similar to HoLep. Then not only was retention negligible but my PSA came down to 0.74 from nearly 8.0 and no more prostate infections since.
My uro also hooked me up with a cath nurse who was invaluable in teaching me the process in my own home. Beginning with the first lesson, the process has been pain-free and much easier to adapt to than I expected. There has been zero bleeding and it feels great to completely empty my bladder each time!
Another plus is the cost is totally covered by Medicare. My supplier keeps in touch to make sure my supply is sufficient so I never have to worry about running out.
Patrick
Howard,
I have tried CIC many times and it was difficult and painful. The last time the pain was so bad I had to stop after only inserting the catheter in one inch. Yes, it was a hydrophilic 14fr catheter. My urethral lining is obviously very sensitive. So, the idea that it is "easier than brushing your teeth" doesn't work for everyone.
No, I was suggesting that CIC should be scheduled so that bladder volume never exceeds 400 ml to facilitate rehabbing the bladder.