Urodynamics test.

[lilshelly]

So I had to go to a urologist the second one mind you. I went in for one thing. He seen my diaper and that got him to asking additional questions unrelated to the original issues that brought me to see him. Long story short despite the fact that I am dealing with a bacterial infection. He wants me to do this test to see if everything is working as it should.
I mean right now if I go to the bathroom when I feel like I have to go I can a little bit to come out when I feel like I have to go and wait I can usually get better results.
They are running another urine test on me. Doctor seems to think that it might be related to my Cerebral Palsy. I have never known myself to have bladder issues with my cp other than over the last couple of years I get worried about falling when trying to make it to the bathroom in time

 

[KechoDrips]

I have one of these tomorrow, not looking forward to it.

 

[Pongoandperdi15]

Had two they are not that bad don't over think it, they just reverse fill your bladder to see what is happening

 

[mickdl]

Urodynamics is usually not a big problem. You just have to make sure that your pelvic floor is relaxed when the catheter is inserted - otherwise it can hurt a bit. I have had several myself, and there was never a problem.

 

[DarkWolf]

This is one of those procedures that tickles my medical fetish immensly, but one which I'd probably not enjoy _at all_ in real life.

 

[Pino]

I had three, the first one was no fun at all, now i do the urethra catheters by myself, preventing any harm, only the back door one is done by the nurse, but that is no problem really, very small probe.
The urodynamics are painful to me all the the time, but this is because of my interstitial cystitis, beside that it is just an awkward situation and no big deal, just try to be relaxed as much as possible.

 

[Pino]

This is one of those procedures that tickles my medical fetish immensly, but one which I'd probably not enjoy _at all_ in real life.

Well, i found the "tilt-table-test" to be the most awkward situation, being tied down all over your body, not allowed to speak, and the final look of "Hannibal Lector" on tour. On top the fact this test was painful and very stressful at the same time and takes 30 minutes, it is like an execution on TV. In my case add a diaper, because the test took some time and you literally can not move and i had to use it in front of the nurse watching the test. Hell, i do hope i never have to do that again.

 

[KechoDrips]

Can confirm it was not fun.

The smaller tube they stick in for filling the bladder and for measuring pressure hurt worse than the large catheter used to drain everything.

Also, peeing around that tube while some stranger was watching me gave me huge issues with flow rate. It was constant start/stop and I wasn’t able to get rid of it all until the doc pulled out the catheter. She now thinks that I need pelvic floor physical therapy because my bladder sphincter was spazing out the whole time and she said the flow rate should look like a bell curve. Every time I’ve peed since it has been a beautiful strong stream with no issues, so now I’ve gotta go back to my original urologist who will be getting this report and try and convince her that a medical test preformed by a professional isn’t right.

Oh, and I got to pay for the privilege. Really looking forward to that bill

 

[EcoIncon]

Three of these for me too. It's certainly not the worst procedure you can have done (@Pino ouch!!!) nor is it the most dignified.

@lilshelly If you're having retention issues, reflux or a lot of other conditions that can be a long-term health issues, this test helps identify them. It's not the most reliable assessment but its an important data point. Go with it, let the doctor know if it seemed to be an accurate representation of how you feel on a daily basis and use it as a component of your decision making.

For me, it wasn't until the third time that I would say the test was accurate. The first and second time, I was having phasic spasms (not like my normal spasms), pain and leaks that weren't normal.

 

[lilshelly]

Three of these for me too. It's certainly not the worst procedure you can have done

I am going to schedule the test tomorrow for the end of September. I have to have the money to pay for one night at a hotel because I am not driving there on the day of the appointment. I am about 3 hours away.
I have tried to find out if there are instances of people with Cerebral Palsy having incontinent issues as adults if they didn't have them as a child. I could not find anything. Some people seem to think that it is cp related.
I guess I am just scared. My thinking was that my cp was only going to affect my legs and the idea that other things could be affected later in life is scary.

 

[Deleted member 73722]

Seeing a urologist is just a added pain in my didee. Had to see one when white cells showed up in one of my yearly tests. After a round of antibiotics that literally gave me the runs and a upset tummy tests came back normal. They scoped me and told me everything was fine. This is one of the reasons I don't want to use that dam intermittent catheter to much risk even though their steral they are still just a pain.

 

[mickdl]

I have tried to find out if there are instances of people with Cerebral Palsy having incontinent issues as adults if they didn't have them as a child. I could not find anything. Some people seem to think that it is cp related.
I guess I am just scared. My thinking was that my cp was only going to affect my legs and the idea that other things could be affected later in life is scary.

Yes - it‘s pretty hard to find information about that. It seems that after the youth the system simply forgets the problem and there‘s not that much research also. I think with the UD you might get an idea if the problem have a neurological root cause. How ever - I think if it’s really such a problem it‘s most likely not located in the brain but more likely a side effect of some spasm caused by the CP that then my have caused some nerve problems. As far as I know, the damage in the brain is not progressive - so if things going worse it’s most likely more a physical problem that results from the affected muscles.

Crossing thumbs that’s something easy…

 

[BabyHailey1977]

What if I have urodynamics and it doesn’t show anything? My urologist wants me to get one down, but I’m afraid that it will say that I shouldn’t be having problems. She wants to throw meds at me which I don’t want to take. I’m ok with diapers and the urologist doesn’t like that.

 

[lilshelly]

Yes - it‘s pretty hard to find information about that. It seems that after the youth the system simply forgets the problem and there‘s not that much research also. I think with the UD you might get an idea if the problem have a neurological root cause. How ever - I think if it’s really such a problem it‘s most likely not located in the brain but more likely a side effect of some spasm caused by the CP that then my have caused some nerve problems. As far as I know, the damage in the brain is not progressive - so if things going worse it’s most likely more a physical problem that results from the affected muscles.

Crossing thumbs that’s something.

Thank you

 

[lilshelly]

What if I have urodynamics and it doesn’t show anything? My urologist wants me to get one down, but I’m afraid that it will say that I shouldn’t be having problems. She wants to throw meds at me which I don’t want to take. I’m ok with diapers and the urologist doesn’t like that.

I did schedule my urodynamics test for October. We will see what happens.

 

[CptKirk]

I've had several of these tests. The test itself is really a non issue. For me the absolute WORST aspect is the fact they have to "ram a catheter into me" and I don't know if that area of my body is "hyper-sensitive" to pain or what, but catheters hurt me so badly I get anxious thinking about them!

The test itself is painless. It's been a while since I had one but you'll get the feeling like you "gotta go now" when they reach whatever capacity of your bladder. I my case, I have very low bladder capacity. I used to have severe urge issues but today I RARELY know I have to go, I'm going etc., until I feel my groin start to get warm.

 

[Pino]

What if I have urodynamics and it doesn’t show anything? My urologist wants me to get one down, but I’m afraid that it will say that I shouldn’t be having problems. She wants to throw meds at me which I don’t want to take. I’m ok with diapers and the urologist doesn’t like that.

I had similar thoughts after three urologists told me: "You are fine, it is all in your head". I convinced my family doctor to send me to urodynamics for testing, but i was really worried that the outcome would be again:"All O.k:".

But it was not.

This was in fact a great relief, because every discussion about it is now gone, even for my other disabilities and chronic illness this gave a huge boost in recognition, what helped me a lot.

Just do it, you already got that "in your head" thing, it can not get worse, but much better when it turns out your problems are proofed.

 

[Pongoandperdi15]

Catheters only hurt if your tense (if all my stomach muscles and leg muscles etc are tense I'm getting nothing in) I know I put one in four times a day, best thing you can do is try and relax my urodynamics didn't hurt the most uncomfortable part was the rear pressure probe for me

 

[mickdl]

I had similar thoughts after three urologists told me: "You are fine, it is all in your head". I convinced my family doctor to send me to urodynamics for testing, but i was really worried that the outcome would be again:"All O.k:".

Yes - that is often a problem.... The point is that the guidelines say that you need a therapeutic indication for the UD. Unfortunately, I didn't know that at the time - and so it took me about a year and a half to get the UD after my more severe problems began. During that time, my urologist simply ignored my back problems and told me I needed an orthopedist. In his opinion, the prostate was the problem and after all medications and conservative therapies failed, he ordered the UD to see if TURP surgery would be appropriate.... Well, the result was clearly a neurological cause in addition to the prostate obstruction - the MRI's ended up confirming that.

From the point of view of my case, it probably didn't matter, because it probably wouldn't have changed the treatment much - but in retrospect I found it a bit annoying how they proceeded and how they simply ignored you as a patient. At least the urologist apologized to me afterwards.

 

[EcoIncon]

What if I have urodynamics and it doesn’t show anything? My urologist wants me to get one down, but I’m afraid that it will say that I shouldn’t be having problems. She wants to throw meds at me which I don’t want to take. I’m ok with diapers and the urologist doesn’t like that.

There is no treatment you are required to take. If they think you shouldn’t be having problems but you are so what? Remember it’s a medical “practice”. Most important thing is to rule out anything serious