How to get bladder to hold urine again? Bladder training?

[Teddy28]

Looking for guidance from others who have had to regain bladder function. I had a bad case of Radiation Cystitis along with hemorrhagic bleeding that sent me to the hospital multiple times for blocked urine flow due to clots, the last time being end of Jan 2023. After 20 sessions of hyperbaric oxygen therapy last year, and 50 sessions this year ending late March (second round needed because of recurrence), I have been completely free of any bleeding , even a tinge, since early May.

But, in my case, possibly because of overdose of Botox for overactive bladder last year, or possibly because I had radiation cystitis, I had to have a supra pubic tube inserted to avoid repeated self catheterization and rupture of fragile blood vessels. It did make life easier and made doing hyperbaric oxygen therapy easier. I am at the point of trying to get my bladder back to holding urine as recommended by my urologist.

The difficulty is that I get these extremely painful bladder spasms starting after about 100 ml of urine holding, and then periodically, until I cannot take it any more, meaning perhaps 6 or more, each lasting up to 20 - 30 seconds. When they become too frequent, usually by around 90 minutes or so, sometimes longer, I need to release the pinch clamp on the SP tube. I have held up to 200 ml, but it is painful to do it. My doctor says over time this should resolve and that it can take 6-9 months to recover bladder capacity. Meanwhile, even during a spasm I get no urine passing normally, even when relaxing the bladder. This is much different than when I had Overactive Bladder, before all this, and release during a spasm would certainly wet my clothes.

I wonder if I should only hold to the first spasm and then release urine. Or may be a combination of both approaches, alternating in some way.

I have started taking Myrbetriq, in the hope that it will enable bladder expansion, yet I do not know whether the spasms are due to bladder muscle stretching (I had 6 months of catheterization / SP tube), or due to sensitivity of bladder lining to urine. I will be checking in with my urologist later this week.

Appreciate comments from those who might have lived through this.

Teddy

[spencoid2]

I have not had a supra pubic catheter but dis have a regular Foley a few times. I had spasms which were very annoying to say the least. It was explained to me that the spasms ae caused by the presence of the catheter bulb. Your bladder "thinks" it is full. I believe there are muscle relaxers and other drugs to treat this but I never had any. The best I could do is to realize that the spasm was "my own doing" and that I could relax and reduce the severity because I knew it was not indicative of a problem, just my over-reaction to the feeling of fullness. once it was explained to me I was able to get pretty good control of the spasms.

[Teddy28 in reply to spencoid2]

Spencoid2- this is helpful, thanks. My bladder spasms that I had with the initial catheter (SP tube) went away somewhat but were completed eliminated when my doctor switched me to a silicon double balloon catheter, which has an extra small balloon at the catheter tip to minimize rubbing against the inner bladder wall. This eliminated all my spasms. Now I get them as my bladder fills and after around 100 ml they appear and are very painful. By the time I reach 150 to 200 ml, I have had enough, as they become more frequent. I am hoping they eventually disappear. I am not quite clear about what you mean that the spasms were you own doing. Can you explain? I do relax the bladder as much as possible - I don't get any normal urination via urethra so can do that.

[spencoid2 in reply to Teddy28]

The small balloon cath sounds like something to keep in mind if I ever need one again. When your bladder is full or if a balloon is making it "think" it is there is a feeling of a sort of pain, not sure i would call it pain but certainly of urgency. You want to cross your legs and run to the bathroom or just yank it out and ... But of course with a catheter and a restricted urethra this is not an option. I found that it was possible to teach myself to not react with a spasm. Even though spasms are "involuntary" you can learn to control them. Not easy but I did reduce the number and intensity a lot. I absolutely hated having a catheter in. At one point when my urination was really restricted (before doing the castor oil treatment) my urologist insisted on either a TURP (not a good idea after extensive radiation) or a supra pubic catheter. I wanted to do anything to avoid the cath.

Is there some reason that you can not just drain all the time? Are you trying to train your bladder to accept some filling? How small is the small balloon, is it just big enough to keep it in? I was of the opinion that a regular balloon was pretty big and rubbed against the bladder inner wall? My bladder is really thick walled from the years of straining. However the last few scans did not mention this and previous ones always did?

[Teddy28 in reply to spencoid2]

Spencoid2 - to answer your questions - Is there some reason that you can not just drain all the time? I drain all the time from SP tube. For various unknown reasons I cannot open the bladder sphincter valve even under pressure from a spasm. I suspect it has to do with overdose of botox for overactive bladder but am not sure. Bladder can only hold 150 -200 and that is with intense painful spasms. But those spasms are not like I had with OAB. More intense pain and not primarily urgency.

Are you trying to train your bladder to accept some filling? Yes - exactly. Not sure if it is best to fill to as much as I can tolerate in the hope that bladder will get used to holding urine. Or just fill until first spasm or maybe for one hour and then drain, before any spasms. I will see dr on Friday

How small is the small balloon, is it just big enough to keep it in? This is a special 2 balloon catheter. Bigger balloon keeps it in place and the small balloon, about 5 cc is just to 'round off' the cath tip so less abrasion to inside bladder wall. There are 2 filling ports. see an example here - shopcatheters.com/p-poiesis...

the doc does not fill both balloons all the way- to minimize bladder irritation.

Teddy

[spencoid2 in reply to Teddy28]

by "open the bladder sphincter" do you mean trying to force urine through the sphincter past the catheter tube? I would expect that would be difficult. I do not remember any leakage when I had a Foley. My problem was, as far as I can figure, severe radiation cystitis right at the bladder sphincter. This is because I could get the cath right to this point and no further, until I found a much better cath and also did the castor oil treatment. I do not have any suggestions for drugs or other ways to relax this muscle. I think that mine was completely blocked so no matter how much I tried to open it it would not pass urine. All my urologist said was that it is a real mess in there no details. Cystoscopy did not reveal much.

Funny how they minimize warning you about the long term side effects of radiation. It was a piece of cake until the cystitis got really bad.

If you like and or have any faith in herbs, you might want to try pedicularis densiflora or abundaflora or "Indian warrior" The link below is just an abstract. And there are many varieties of pedicularis. I think I still have a large amount of the dried flowers (some people say the leaves are more potent?) and could send you some. I don't recall that it helped me Who knows?

pubmed.ncbi.nlm.nih.gov/289....

[Teddy28 in reply to spencoid2]

My catheter , actually a suprapubic catheter directly enters the bladder from the skin. A few inches below belly button. Not able to urinate normally. I will check your reference link.

[spencoid2 in reply to Teddy28]

i kind of forgot that so you can get absolutely nothing through your bladder sphincter? have you tried self cath and what is the result? when i had issues i could not get any catheter in until i found a brand and type that worked, actually two. i tried everything, large small self lubed not self lubed. straight tip coude tip. Then someone recommended a catheter that has what is called a tieman tip. I forget exactly what the difference is but it worked. even before castor oil treatment. I can either try to find a link to the ones that worked for me or i could mail you some. since i do not use (other than to check and to keep sphincter under control) them and since i was getting enough to use 4 times a day i have a warehouse full. I can mail you both types and maybe different sizes. I think they are 12 and 14 french. I can also send some indian warrior to make tea with, if nothing else it might have a placebo effect it is amazing how difficult it is to find this catheter even with the number off the package. this link looks like it but there is no mention of tieman it just says tapered coude which might be the same. my package says speedicath standard 28494 tieman male fr 14.4.7 mm

i would get your MO urologist or whatever to prescribe it in as much detail as possible the cath companies give free samples but the prescription needs to very closely match what you want a sample of. if they prescribe the wrong size or who knows what they can not fill the prescription. but you can avoid all that by having me mail you some. i don' thin it is illegal? but who gives a shit. i wish someone mailed me some. it took about 20 tries before i got something that works.

180medical.com/product-deta...

[Teddy28 in reply to spencoid2]

No need to self cath. I did that last fall periodically and often triggered bleeding. Have not done self cath since I got the SP tube / catheter. Don't really want to and the urologist prefers not to test it. Nothing to gain I guess from doing that

[spencoid2 in reply to Teddy28]

my bleeding, some times a lot, and shedding of tissue did not correlate with anything i could figure out. specifically i did not see any more bleeding after self cathing. my orologist was insisting on a SP cath, said it would be so easy. We among other things I live far from medical care and it would mean even more traveling to change etc. I put it off as long as possible and finally I won. I have really minimal urinary issues now (fingers very crossed, toes too) and hope it stays that way. I think the URO suggested that if I got the SP it was the end of dick based peeing. My little dick is not good for much anymore but it does feel real good to have a natural pee outside. Probably is for you.

[Rogersw]

Have you tried using a flip flow valve instead of a bag much more comfortable especially when travelling

[Teddy28 in reply to Rogersw]

I am familiar with this however right now my bladder cannot hold much urine