What's next after Desmopressin?

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I have tried using Desmopressin for about two weeks to stop nocturia (peeing 3 to 5 times during sleep). It did not work. Today I saw the urologist who did my emergency hydrocelectomy back in January. The next step after Desmopressin not working is self-catheterization. I was taught how to do it today; however, if any male experienced in this group has any advice, I would really appreciate it.

Thanks in advance.

BTW, I could not see the doctor who implanted my current Interstim device, which is definitely helping, until April 26. I didn't feel I could wait that long to get more sleep than I've been getting.

 

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What about Botox? I never had to self-cath before I was allowed to try Botox!

 

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To give you any safe and accurate info regarding when to self cath etc., you would need to know how much urine you are producing and in what timeframe. Do you still have full sensation in your bladder? You also need to know how much pressure you develop and in what timeframe if your sensation has been altered.
I know it sounds like a lot, but we are all wired differently, and have a wide variety of bladder sizes. I almost blew out my kidneys after the indwelling “Foley” was removed after 8 weeks because at that time I had no feeling post accident, and my bladder just blew up like a balloon due to the IV’s.
If they’ve already done studies on your bladder (Urodynamics) pre-op, they should be able to provide you with a pretty good timeline to get you “Going”!
Good Luck!

 

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I've self catheterized for the last 5-ish months due to retention from Botox. There are others with more years under their belt.

So,...here are some pearls

1. It gets easier once you become more comfortable with the process
2. Try different sizes (fr) and styles (straight, coude) to find what works for you. Don't be afraid to ask to try different sizes/styles.
a. smaller diameters will take longer and are not always more comfortable
b. rubber vs coated makes a big difference in preparation and comfort. Coated rocks!
c. 14 fr works for me
3. Get the ones with a fully contained sheath. You don't need to lube or touch the cath
4. Don't wait until your bladder is bursting. You can get overflow around the catheter.
5. Get your Rx to include travel catheters, and keep some in each car, bag, and jacket.
a. like colplast's speed cath flex or hollister vapro

Biggest tip:
6. Technique matters. Don't just shove it in or yank it out! If you pause when you feel it getting to your prostate, pause, relax, then proceed. It really makes a difference!

 

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@theMochi, thanks for these tips! The catheters were ordered today based on the doctor's specs. I hope they meet some that you have shared. I really appreciate #6.

 

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@Sprung87, I will be self-cathing at night so that I do not wake up the 3, 4, or 5 times that I typically wake up. I have a small bladder (approx. 300 ml) which is part of the issue with frequent urinating during my sleeping hours.

 

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@snow, I still will meet with my other urologist, but not do so until April 26. I decided to give this a try from now until then. When I meet with that doctor, who implanted my Interstim device, I will get his thoughts. In the meantime, I hope to get better sleep. I will mention Botox to him as that was not mentioned as an option by the urologist I saw today. Thanks for reminding of this option which we have discussed previously.

 

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I must use CIC up too 6 times per day, or Foley catheter for over 10 years, big thing with cathing, is keep the cath sterile and in and out.

 

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Catheters lead to nearly endless UTIs and the build up on of scar tissue.

 

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Just a little confused, you have had interstim implanted and say it is working, but you are still having problems. Can you talk a little bit more about how the interstim is helping? My doctor is recommending interstim and I am not convinced to go forward.
Thanks for your help with this

 

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@stuart, the Interstim helps with overactive bladder assuming other issues like BPH have been taken care of. That was my initial issue and the first doctor I had in 2017 said an Interstim device would help. He implanted my first one in 2017. In 2019 the device stopped working due to an issue with its electronics. I went to a second urologist who told me my BPH was the issue that should be fixed before another Interstim device was implanted. He removed 65% of my prostate and referred me to an OAB doctor in his practice. She did a bad job with both Interstim installations in 2022.

I located a more experienced urologist who did my most recent implant in February of this year.

That's the chronology and history in a nutshell.

I also have nocturia which causes me to per 3 to 5 times each night while I'm sleeping. Interstim does not help with decreasing those numbers so I recently tried Desmopressin which is supposed to help stop or reduce nocturia. It has not helped me.

FWIW, to you, Stuart, last night, for the first time, I self-catheterized, and slept through the entire night.

I'm happy to answer any other questions based on my experience.

 

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Thank you for sharing your experiences. Hope the new good experiences continue.

 

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@fleemoore how are you getting along? CIC will empty you out, and once you get this down pat, there are other things you can ask for
boom

 

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@Boomersway, the nocturia was not helped by the desmopressin, but the 50 mg of Myrbetriq I take each night has reduced the 4 to 5 times per night to 2, sometimes 3 awakenings. I consider that to be a nice improvement. I have even tried drinking a beverage an hour or so before bed and I still go 2, sometimes 3 times a night. Thanks for asking. I hope things are going well for you, Boomersway.

 

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@fleemoore that is wonderful news, hopefully this movement will continue for you. We are all on a journey , and one never knows what direction it could take us

Me well, not a good change, but this is my life. I just keep trying to find my way. Thank you for asking.

 

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@Boomersway, the nocturia was not helped by the desmopressin, but the 50 mg of Myrbetriq I take each night has reduced the 4 to 5 times per night to 2, sometimes 3 awakenings. I consider that to be a nice improvement. I have even tried drinking a beverage an hour or so before bed and I still go 2, sometimes 3 times a night. Thanks for asking. I hope things are going well for you, Boomersway.

Please let me know; or tell the forum how Myrbetriq works long term for you. It only worked for so long for myself until it stopped working and let me back at square one.

Desmopression reaction to me was almost a kin to taking a 5 hour energy - so no dice there unfortunately.

Blessings,
Honeeecombs

 

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@Honeeecombs, I have previously taken Myrbetriq prior to my BPH surgery but it did nothing for me. After desmopressin was unsuccessful, I was given Myrbetriq to see if it would help with nocturia. So far, after about 3 months, it has lessened the number of times I get up to go pee at night from 4 or 5 times to about two.

FWIW, the newest drug out there is Gemtesa. Prior to my fourth Interstim implant, I used that for 30 days and it did nothing to improve any of my symptoms at the time, frequency, urgency, or nocturia.

I have more adjustments to make to my Interstim device that will hopefully improve my situation. Time will tell.

Hope this helps.

 

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@Honeeecombs

Botox. I’ll never understand why only about five people on the forum actually try it. I know Medicare pays for it and Medicaid in most states also pays for it.

As for Myrbetriq, it didn’t work for me short nor long-term. If you want to take a medication, have you tried Oxybutynin/Ditropan? It’s one of the oldest medications still in use for any diagnosis. It did help me for a while but also in some way it made my urgency and my frequency worse but I had fewer leaks overall and more time to make it to the bathroom after my first warning sign. It *will* rot your teeth, though: be warned! For me, the benefits provided by Oxybuynin compared to the tremendous expense that I have to pay now, in my mouth, for the rest of my life: there’s no contest; pads and diapers are the way to go in terms of saving money and your teeth. The second leading cause of premature death is rotten teeth.

What about the AUS surgery all the men rave about? Botox is way easier than any surgery that necessitates a six-week-long recovery. Botox pinches for 1-2 days then you have Bliss for at least three months, and for most people it’s more like six months.

Hope this helps!

 

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@Honeeecombs

Penile clamp? Condom catheter?