Urodynamics exam- what to expect and how to be brave?

[Anonymous]

Hi all,

At the recommendation of @SpAzpieSweeTot, I am biting the bullet and going for a urodynamics exam on Monday. I have cerebral palsy and my arms and legs move involuntarily at times and so it would make sense that my bladder/bowel muscles would do the same.

What should I expect when I go for the test? I am almost certain that my cerebral palsy is responsible for what is going on but there’s a part of me that is clinging on to the possibility that it may be something else.

Finally, how do I get used to pull-ups, powder etc.? It almost feels like I’m giving up, which is something I don’t like to do. I thought my brain was more malleable than it is.

I never wanted to be the guy in a wheelchair who is 4-5 years old physically. There’s something about proving other people wrong that is appealing to me for some reason, even if it gets me in trouble a lot.

Any words of healing would be helpful

 

[SpAzpieSweeTot]

Tonight is going to be early, and tomorrow will too. But I will say more tomorrow. For now, breathe. We know exactly how you feel.

 

[Anonymous]

Thank you!

 

[Tinklepanties]

As a “survivor“ of a urodynamics test about a year ago, I can tell you the actual procedure - at least for me - was much better than the stress of anticipation. The nurses that prepped me were very kind, considerate, and professional. They kept me informed of everything that was happening, and the entire process took less about half an hour.
They inserted 2 catheters into my bladder. The first one was larger, but wasn’t objectionably so. The second, which is used to fill your bladder with a saline solution, was even smaller. They also will place a small “ballon” sensor in your rectum to monitor how well you empty your bladder. The most awkward part was when you empty your bladder, as they have you stand and basically pee into a basin below you - which i had to do twice.
All in all, it was no big deal, at least for me.
Hope that helps, and feel free to ask if you’ve any questions!

 

[Pino]

I had one already and will have one soon again.

It is no fun and in my case there was pain involved, but that is due to my situation and is not common.

The biggest problem is the situation itself, you have to strip down and getting catheters "everywhere" is slightly humiliating.
All the stuff was very professional, but not exactly what i would call "friendly".

You are not allowed to get sedatives. That would help me a lot, because due to my POTS it is a lot of stress for me.
They used a tilt table in my case, what looks something like an execution.

All in all it was not that bad, don't worry to much. For most it is just "unpleasant".

 

[Angelapinks]

Hi all,

At the recommendation of @SpAzpieSweeTot, I am biting the bullet and going for a urodynamics exam on Monday. I have cerebral palsy and my arms and legs move involuntarily at times and so it would make sense that my bladder/bowel muscles would do the same.

What should I expect when I go for the test? I am almost certain that my cerebral palsy is responsible for what is going on but there’s a part of me that is clinging on to the possibility that it may be something else.

Finally, how do I get used to pull-ups, powder etc.? It almost feels like I’m giving up, which is something I don’t like to do. I thought my brain was more malleable than it is.

I never wanted to be the guy in a wheelchair who is 4-5 years old physically. There’s something about proving other people wrong that is appealing to me for some reason, even if it gets me in trouble a lot.

Any words of healing would be helpful

I have not done this test for a few years now but you can not really prepare much for this other than what the doctor or hospital tells you to do. It is not a pleasant experience if you get embarrassed easily but it does not take too long although while doing it you may think it is hours long. If they are using the camera into your bladder it is a strange experience and does hurt a little afterwards when you pee but it does get better. I think I have had this done twice in the last 8 or 10 years and I think getting nervous beforehand was maybe the worst part. Good luck on a successful test and some positive results.

 

[SpAzpieSweeTot]

It's not like petting puppies. It's not comfy, happy, fun time, but the surgeries we tend to need as people with CP are worse.

Acknowledge your Little side being freaked out before you go, and do whatever it takes to calm it, before you get to the office. Bring a stress ball to squeeze, during the procedures, bonus points if it has a cute face. See? It's a stress ball, but it's also a friend.

Look for an ice cream shop, or your favorite chain restaurant, near the Dr.'s office, and tell yourself that after It's over, you get to go there. Yay!

You. . . Are not. . . Giving up. That's your CP talking, loudly enough that it's screaming. There's a lot of fears in you, that I don't have words for, but I know what they are. My future husband knows what they are. Everyone with CP knows what they are, I bet you $100, rather we can express them or not. Your protection does not mean you deserve a human warehouse to live in. You're not going to stop being able to go to the toilet completely, if you can at all help it. You're too scared of losing that skill to let yourself do it. You're still Rory. Rory's muscles were just different than he thought.

You asked me on another thread how this effects dating. My future husband has CP, and is IC. He's even my flavor of weird, so, it doesn't.

Also, try something belted, like the Abena Abri Wing M3. Pull-ups can be a pain in the butt to change with pants on. The belts let you pull them on like a Pull-up, but take them off like a diaper. They hold more than Pull-ups, too.

 

[Bombyx]

I'm curious how urodynamics studies are helpful. Like, if they find X, they would do Y or give you medication Z? For me, I went to a urologist, tried several meds, and nothing really helped. But the urologist never suggested urodynamics. Not that I'm keen to bring it up.

 

[SpAzpieSweeTot]

I'm curious how urodynamics studies are helpful. Like, if they find X, they would do Y or give you medication Z? For me, I went to a urologist, tried several meds, and nothing really helped. But the urologist never suggested urodynamics. Not that I'm keen to bring it up.

He's hoping to see his bladder spasm, in real time, so he knows he's not being stupid, crazy, or lazy. The darn thing is spastic, or stretched out, or damaged. Whatever it is, he wants to see it, so he can stop beating himself up. It helps them know where the muscles are good, where they are bad, and knowing that can change what doctors do.

Rory, call and ask for the camera. If you don't, you won't be able to lay eyes on the problem.

 

[Bombyx]

He's hoping to see his bladder spasm, in real time, so he knows he's not being stupid, crazy, or lazy. The darn thing is spastic, or stretched out, or damaged. Whatever it is, he wants to see it, so he can stop beating himself up. It helps them know where the muscles are good, where they are bad, and knowing that can change what doctors do.

Rory, call and ask for the camera. If you don't, you won't be able to lay eyes on the problem.

1. Isn’t there just one bladder muscle? 2. You mean the main point is to prove that patients aren’t lying about having bladder muscle spasms? Can’t they just trust us?

 

[Anonymous]

@Bombyx It’s not that I don’t trust urologists, it’s that I never expected this to happen so I just want to see it in real time so I’m not lying to myself that it’s something I did.

plus, I suspect my urologist probably doesn’t know a lot about cerebral palsy but doesn’t feel comfortable telling me.

 

[Anonymous]

@SpAzpieSweeTot I didn’t know you had to ask for a camera…

 

[SpAzpieSweeTot]

Well, you don't, if they were already planning on it. It would just suck to get there and discover they weren't planning on it. Make sure they do. They usually put my future husband on a table and do his, since standing and walking aren't an option for him. You may be more comfortable lying down, too.

Last time my sweetheart got his done, he got there, and his bladder behaved itself. Lol. He had taken meds though.

 

[boybecomesdiapergirl]

Hi all,

At the recommendation of @SpAzpieSweeTot, I am biting the bullet and going for a urodynamics exam on Monday. I have cerebral palsy and my arms and legs move involuntarily at times and so it would make sense that my bladder/bowel muscles would do the same.

What should I expect when I go for the test? I am almost certain that my cerebral palsy is responsible for what is going on but there’s a part of me that is clinging on to the possibility that it may be something else.

Finally, how do I get used to pull-ups, powder etc.? It almost feels like I’m giving up, which is something I don’t like to do. I thought my brain was more malleable than it is.

I never wanted to be the guy in a wheelchair who is 4-5 years old physically. There’s something about proving other people wrong that is appealing to me for some reason, even if it gets me in trouble a lot.

Any words of healing would be helpful

You got this don’t panic that is the worse when you tense up. I went thru this yrs ago but not that severe they put me out for it and went up with a camera I didn’t feel a thing even after I woke up but still have to wear diapers at night but it’s ok. You will be ok just bring a stress ball like someone else said and relax

 

[SpAzpieSweeTot]

1. Isn’t there just one bladder muscle? 2. You mean the main point is to prove that patients aren’t lying about having bladder muscle spasms? Can’t they just trust us?

Well, there's the bladder sack, where the pee is held, then there's the bladder neck, at the end of which is the muscle that must open and close. The doctor does know something is wrong. Rory wants to see his bladder actively pitch a fit, so he knows the issue isn't between his ears.

 

[CheshireCat]

The sensors on the abdomen, in the rectum, and at the tip of one of the catheters tells them what the bladder is actually doing. They correlate this with how much solution has been introduced into the bladder and asking the patient questions what they are sensing during the test. They have the patient cough to put pressure on the bladder, while marking it on the computer record, again to correlate how things work and for a sanity check.

My bladder use to spasm during urodynamics, but I wouldn't feel the spasms. Now my bladder doesn't do anything other than overfill. When I hit 2000 mL my blood pressure spikes and my body starts shutting down. Based upon the results of the test, I now self-cath four times a day and follow a voiding schedule, even though I need diapers. The reason being is if I go into retention, which I do on occasion, and go into shock, I may not be able to call 911. There's a lot of data that is gleaned from the test, which also gives a baseline for changes that may occur later.

 

[Angelapinks]

It's not like petting puppies. It's not comfy, happy, fun time, but the surgeries we tend to need as people with CP are worse.

Acknowledge your Little side being freaked out before you go, and do whatever it takes to calm it, before you get to the office. Bring a stress ball to squeeze, during the procedures, bonus points if it has a cute face. See? It's a stress ball, but it's also a friend.

Look for an ice cream shop, or your favorite chain restaurant, near the Dr.'s office, and tell yourself that after It's over, you get to go there. Yay!

You. . . Are not. . . Giving up. That's your CP talking, loudly enough that it's screaming. There's a lot of fears in you, that I don't have words for, but I know what they are. My future husband knows what they are. Everyone with CP knows what they are, I bet you $100, rather we can express them or not. Your protection does not mean you deserve a human warehouse to live in. You're not going to stop being able to go to the toilet completely, if you can at all help it. You're too scared of losing that skill to let yourself do it. You're still Rory. Rory's muscles were just different than he thought.

You asked me on another thread how this effects dating. My future husband has CP, and is IC. He's even my flavor of weird, so, it doesn't.

Also, try something belted, like the Abena Abri Wing M3. Pull-ups can be a pain in the butt to change with pants on. The belts let you pull them on like a Pull-up, but take them off like a diaper. They hold more than Pull-ups, too.

I have this one done in the doctors office every year but the one with the camera and other tests as I was saying are done at the hospital every few years. It has been two years or more since I had any of these due to Covid but I am booked in to see him later this year.

 

[Anonymous]

Thank you all for the information. I am going to let them know tomorrow that I would like the camera component so I can actually see what is going on.

How do you guys deal with the stigma around pull-ups? I ordered some Abena M3 diapers/pull-ups but I’m trying to reframe things in my mind so that I’m ok with it. It’s just such a personal function to lose control over that adds am extra layer of embarrassment.

I also have my helpers apply baby powder around that area and it helps prevent rashes.

Do you guys know if condom catheters work? I’m in the process of exploring job/internship opportunities and I don’t want to get up to go to the bathroom every half hour.

 

[Pino]

Thank you all for the information. I am going to let them know tomorrow that I would like the camera component so I can actually see what is going on.

How do you guys deal with the stigma around pull-ups? I ordered some Abena M3 diapers/pull-ups but I’m trying to reframe things in my mind so that I’m ok with it. It’s just such a personal function to lose control over that adds am extra layer of embarrassment.

I also have my helpers apply baby powder around that area and it helps prevent rashes.

Do you guys know if condom catheters work? I’m in the process of exploring job/internship opportunities and I don’t want to get up to go to the bathroom every half hour.

The condom catheters can work, here in this forum are several threads about them, some of myself, just look for it.
For me they are not the best solution but i have got some here and used them sometimes for a reason, like doing the colonoscopy or just getting some air down there, when i had some really bad days and diapers got irritating.

About the stigma with Pull-Ups, it is much less and more accepted than "real" diapers. I never had a problem with them and i am not ashamed anymore to show them for example at my sports, but i would not like to show my Attends Active L8 - L10. But the Pants? Not a problem for me.
This maybe very personal of course.

P.S.: I do never use any powder.