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I'm a middle aged male who has hit a dead end with treatments for major nocturia (not incontinence or wetting). Only 2 main options are left: Botox or stimulator. My questions are:

1) Is anyone aware of major medical centers, like Mayo or university med centers, that have a reputation for top rate diagnosis and treatment of nocturia and difficult bladder issues?

2) Can members here recommend other forums that they find useful in addition to this one?

My life has been a wreck for the last two years and I'm giving thought to traveling to Mayo Clinic in MN to see if they can figure anything out that local docs may have missed.

Summary of my situation: My evaluations have included: Sleep study, prostate exam, PSA, 4K (new test for cancer), ultrasound, CT of pelvic area, bloodwork and urinalysis, and most fun of all the cystoscope. All results negative for any visible disorder. I'm on combination Myrbetriq, Vesicare, and I take amitriptyline and ambien to at least knock me out for a couple hours. But even all that isn't help much and it's expensive! In addition I've had two courses of antibiotics, physical therapy, TENS, dietary changes. Doc says maybe implanted stimulator or Botox would likely be our next options.
 
I share your frustration. I have very similar symptoms and have had very similar treatments as you. I have also had the Rezume treatment with no impact. My urologist has recommended an implanted stimulator. My primary doctor has suggested a get a second opinion before going with that treatment. It almost seems as though the best diagnosis is: Shit Happens!
I have not found another forum that offers better advice or more supportive responses.
Good Luck with your search.
 
stuart said:
I share your frustration. I have very similar symptoms and have had very similar treatments as you. I have also had the Rezume treatment with no impact. My urologist has recommended an implanted stimulator. My primary doctor has suggested a get a second opinion before going with that treatment. It almost seems as though the best diagnosis is: Shit Happens!
I have not found another forum that offers better advice or more supportive responses.
Good Luck with your search.

Thank you! Yes, it sounds like we are in the same situation. It's very frustrating. If I take enough drugs to sleep I'm practically under general anesthesia which is dangerous. I can only function 8-10 hours a day and the drugs are effecting memory and cognitive functions. Seems to me that knocking someone out is a primitive way to deal with the problem. I am reluctant to go with the stimulator or Botox. I'm a perfectly healthy guy, athletic even, except I have to pee constantly at night. Two years ago this problem didn't even exist. Having a device implanted, that may not even work, is a whole other way of life. I can't help thinking there has got to be way to attenuate the urge sensations without relying on an electronic device. Botox might work, but about 30 percent of treatments result in retention and therefore the need to catheterize. Even then there is the possibility of still having the sensations and not sleeping but with the added problem of not being able to pee. And it means a needle slid up my urethra every 3 months! It just seems like an over sensitivity situation. As soon as there is just a tiny bit of urine in the bladder my urgency starts.

I retired early and planned to travel. Just as soon as I got my new passport this all started happening. It's ruined relationships and I really can't even return to a job with this lifestyle. So I'm stuck at home or places that have bathrooms (I picked my barber shop because they have a restroom!). Can't fly anywhere because I'd never make it through security before I had to pee. And worst of all are hellish nights. Another problem, which others may have, is doctors don't seem to take me seriously. "You seem fine and you look like you're in great shape!" Even when I tell them I'm borderline suicidal from exhaustion. Maybe I need to practice looking sick.

I guess my plan will be to go to Mayo in Rochester MN. If I have to rent an apartment up there to figure this out I'll do that. Two years of this is literally taking years off my life.

Sorry I had to vent my frustrations. I know many have the same or worse conditions. I just don't have anyone around me that understands the torture of being awakened every 10-15 minutes.
 
Ron, you need to keep trying to make things better. You are NOT alone. The frustration you are feeling is real. I don't know if the implant is the right thing to do, but I am willing to consider it in order to get a good nights sleep. I have not gone the medicine route at night because that scares me more than the other options.
Please never apologize for venting on this site. That is why we are here, to let you know you are not alone!
Keep the faith brother. We all have to believe the answer is there, we just need to find it!
Good Luck!
 
stuart said:
Just click on the hearts to the right of each post!

Thank you! For some reason I had to reload the page before it would work. I appreciate the comments. Soon, it will be time for the thing I dread, going to bed and all the drama that will unfold until the sun rises.
 
This is a reprint of my experiences over the years with the same problem:

My problem started as painful urination along with frequency and urgency; only mild leakage and had to go about every 30-60 minutes. So sleeping was difficult.

I have had many other procedures including urodynamics testing, 4 cystoscopy with dilations, medications, Interstim implant, and finally "REZUM". They helped with urgency, but not with frequency.

Then I had an implanted Medtronic interstim device. This really has worked well for me. It works like a pacemaker for the bladder. The device is about the size of a silver dollar. I requested that it be implanted in my back a few inches above my belt line. Wires run under the skin to the bladder. The device has 4 channels loaded that I can tinker with to find what works best for me. Actually, there are 99 channels available that the doctor or Medtronic sales rep can change. I have an external transmitter that I use to select one of the 4 channels and change the amplitude. So you can change it as your body changes. It works like a Bluetooth device. (Some people are not aware that there is an external trial before actually committing to the implant.)

Now, I can sometimes wait as long as 3 hours to urinate. That is a great improvement for me!

I had the REZUM procedure this past Thursday (7/25/2019). This is a relatively new way to treat BPH (enlarged prostate). They insert a small cystoscope into the urethra to inspect the bladder. Then another device is inserted that is hollow. A special needle is inserted through that, and punctures the wall into the inner core of the prostate. Radio frequency turns water into steam and kills cells in that area. Each treatment is about 9 seconds long, and can be inserted in as many places as the surgeon thinks necessary. (In my case, only 2 locations were treated.) Over time the body removes the dead cells and that reduces the size of the prostate, thus relieving excess pressure. It is said that it has about 95% success rate with very little risk compared to previous techniques.
UPDATE: I had my 1 month follow-up this week. I am pleased to report that I am doing better than normal! The pain is much less and frequency less. The doc says it will continue to improve over the next year.:D

Here is how the REZUM procedure went:

* I checked in to the doctor's office at 10:00; the procedure began at 11:00. This was an area in the office that I had never seen before. The I/V was insert and other preparations were carried out on one side of the hall. The procedure itself was directly across the hall. It looked like a regular hospital setting, but smaller.

* A nurse carefully demonstrated how I was going to use the two different catheter bags I was going to use for the next 3 days; a smaller one for daytime and a larger one for bedtime. I was allowed to play with all the gear until I felt I could understand what I was going to do with it.

* They administered antibiotic, Fentanyl, and Propofol/Lidocaine. I had asked that they go very slow with the Propofol because my veins burn like fire if it is given too quickly. They did well.

* Less than 5 minutes later I was waking up as they lifted me from one gerny to another and moved to a recovery room. That was FAST!

* The procedure was painless, but by the time I arrived home I was
was suffering. It hurt so much that I feared I would not be able to sleep. However, by 10:00 P.M. I was better, and by morning pain was not an issue. They had told me to buy an over-the-counter med called "AZO" (at Walgreens). I took 2 pills, 3 times per day for only 2 days. It turns the urine to a dark yellow/orange. Yukky!

* The biggest hassle was draining and changing the bags, and also finding ways to keep the bags below the bladder for proper drainage.

* Sunday (this morning) was my biggest concern: taking out the catheter myself and peeing within 6 hours else go to the emergency room. I was advised to do this while taking a shower. Praise Jesus, it worked well, and I peed within 3 hours!

* The doctor explained that healing and full benefits could be as much as 3 months; some do better.

I am blessed to live near this doctor since he is one of only a few in the country that specializes in complex male and female surgeries. Here is his name and address:

Dr. Samuel J. KUYKENDALL (pronounced: Ker-kin-doll)
Kansas City Urology Care
4321 Washington
Suite 5300
Kansas City, Missouri 64111
816-531-1234

He also has an Overland Park, Kansas office:
10701 Nall
Suite 100
Overland Park, Kansas 66211
913-338-5585

www.kcurology.com/our-physicians/sam-kuykendall-md.html

(He is older than he looks in the site's picture.)

This is a big group of doctors with many locations around the metropolitan area. My first doctor was Dr. David BOCK. He referred me to his colleague, Dr. Kuykendall. They are both very nice and friendly and easy to talk to.

God bless you all! 🙏🏻 🙂
 
That is wonderful news JarJar. What a Blessing. Very happy for your progress.
Have a great holiday weekend my friend!
Jim
 
@MezaJarJarBinks Thank you for sharing your experiences. I also have had the Rezum procedure. However, I was awake during the procedure. Anyone considering Rezum should INSIST that you be given propofol for the procedure. The pain during the Rezum if awake is incredibly intense. I have had kidney stone which is the worst pain I had experienced until the Rezum the procedure. It made the kidney stones seem like a walk in the park. Good luck to all and I wish Jar Jar continued success in his treatment.
 
@stuart

Your are very welcome. I'm thankful to Jesus that I'm alive and still able to share.

Just like Joseph said in the Old Testament, bad things happen so that God can use them for good things.

God bless you!
 
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