Uranamic testing (maybe she meant urodynamic) and scope?

[Star B.]

Hi,

I was diagnosed by my urologist in 2008 after she did a hydrodistension and cystoscopy. I moved out of state for several years (with several other uro's) and am now back seeing her. None of the drugs or instills have worked for me and she is saying that we need to try the ankle-stim or inter-stim. (I'm much more open to the ankle one, as it doesn't seem as invasive and scary).
Thing is, she says that in order for insurance companies to ok these options, she has to do uranamic testing and a scope. I can't find anything about uranamic testing, so I'm thinking she means urodynamic. Is this a normal path people have had to take to get further treatment? All I know is that I hurt unbearably and am not wanting to make that worse. I have the feeling of urgency all the time, but the pain is my worse symptom even when I don't have to pee. I'm not sure how this testing will reflect that or if it's necessary. I can't imagine any more painful procedures.
Any thoughts?

[eyeliner128]

Re: Uranamic testing (maybe she meant urodynamic) and scope?

I agree with you - I think that in most cases, urodynamics is unnecessary and barbaric. No matter what they find or don't find, the conclusion is the same: you are in pain and need treatment.

I have never heard of this being a requirement for the insurance companies, but it doesn't surprise me. I'm not sure if there is a way around this or not, but I would be up front with your doctor and tell him/her that you are not comfortable with urodynamics and are afraid that it will make your symptoms worse. I've been refused treatment not by insurance, but by doctors, for not consenting to a second hydrodistention.

These are our bodies, and we are entitled to a voice - to refuse ANY test or procedure without intimidation or fear. Please keep us updated.

[jen74]

Re: Uranamic testing (maybe she meant urodynamic) and scope?

Urodynamic testing is of no use unless you are having an issue urinating ALL the time, every time you pee. I remember years ago a urogyne I was seeing wanted me to have this test. I asked my gastroenterologist about it ( he was a genius, literally). He said urodynamics is a function test, and function tests have much room for error, meaning they can be extremely unreliable. He is the one who told me that unless I am having an issue with not being able to urinate or having a very weak stream every single time I urinated, that the results would not be worth a hill of beans!

Also this test is Super expensive! I know during one point of this test they have you urinate with a catheter still inside you. I could never pee like that and I could never pee in front of someone either so that alone would botch the whole test for me( so in other words, you might as well have put your money in the shredder). Just too many variables to that test unless like my gastro said, you are having an issue all the time with urination( weak stream or not being able to urinate all the time). He compared it to the gastric emptying scan. He said that is also a function test. He said it only works well if you have symptoms every single time you eat no matter what you eat every day, day in and day out. That way there is no room for any variables or error.

[ICNDonna]

Re: Uranamic testing (maybe she meant urodynamic) and scope?

I had urodynamics testing back when I was undergoing the ruling out process that's a part of an IC diagnosis. It actually wasn't that bad --- and if the insurance is requiring it for certain treatment options, it could be worthwhile. If you've ever had a catheter inserted, it wasn't any worse than that for me. You might want to have a look at the AUA Guidelines for Treatment (line in my signature below) and discuss some of their recommendations with your doctor before making your decision.

Warm healing thoughts,
Donna

[Star B.]

Re: Uranamic testing (maybe she meant urodynamic) and scope?

I'm actually dealing with a horrible flare made worse by the instillation catheter they used (which is tiny). The doctor is aware of this. I'm at a loss. I can't go through these tests, but I can't handle this pain anymore either. I know from experience they would make things worse. It's all so much to deal with. I guess I'll try and have another appointment with her and see if there's anything else we can try. If not, I'm not sure.

[ICNDonna]

Re: Uranamic testing (maybe she meant urodynamic) and scope?

I'm actually dealing with a horrible flare made worse by the instillation catheter they used (which is tiny). The doctor is aware of this. I'm at a loss. I can't go through these tests, but I can't handle this pain anymore either. I know from experience they would make things worse. It's all so much to deal with. I guess I'll try and have another appointment with her and see if there's anything else we can try. If not, I'm not sure.

It might be that if your doctor will give you something to help you relax, the test wouldn't be as bad. I know that relaxing helps me with any procedure (needle stick, catheter, etc.) relaxing helps me.

[Star B.]

Re: Uranamic testing (maybe she meant urodynamic) and scope?

Update: I just went for an appointment with my urologist to discuss all of this and she said she thinks she can try to get the ankle-stim thing approved without the testing, so that's good. She's still pushing the interstim, but thinks the ankle one might help. Fingers crossed that my insurance approves it and that it actually improves things!

[eyeliner128]

Re: Uranamic testing (maybe she meant urodynamic) and scope?

That's good to hear. It never ceases to amaze me how, if a patient just persists and asks twice or thrice, doctors can suddenly change their minds about treatment options.

[jen74]

Re: Uranamic testing (maybe she meant urodynamic) and scope?

I agree. I think they will change their minds because they don't want to lose a patient because then they are losing $$$$. I have found as a patient you have to be persistent when it comes to your health as well as firm. You are hiring them to give you advice and help, but in the end you are the one making the final decisions. I have fired quite a few doctors since getting sick 11 years ago. It sometimes takes awhile before you find a doctor who is actually a good fit. In my opinion a good doctor is always open minded and willing to discuss things with their patients. They also are willing to compromise and understand that one size does not fit all when it comes to any disease. It is so hard to find this kind of doctor these days though. I remember seeing a urogynecologist( and she was a woman so you would think she would be more understanding and compassionate),she was awful! She actually told me that her ways of treating IC were what worked for everyone with the disease and that was that. She refused to change her protocol to fit individual needs. I dropped her quick. Sometimes it takes awhile but there are good doctors out there, we just have to search them out.

That's good to hear. It never ceases to amaze me how, if a patient just persists and asks twice or thrice, doctors can suddenly change their minds about treatment options.

[HOPE2FLY]

Re: Uranamic testing (maybe she meant urodynamic) and scope?

NOOOOOOOOOOOO, to urodynamics testing. This was the worst pain ever. Imagine trying to fill your bladder up to capacity to see how much urine you can hold without anesthesia. As soon as my bladder get a little bit of urine i must pee or else the pain will get worst. I was not able to tolerate the test and had to stop half way through due to excruciating pain. When they do a cystoscopy with hydro distension they can see the capacity of your bladder.

I did try the ankle stimulation, it took me on remission. I tried it for 12 consecutive weeks, every Friday. However, a month after the treatment was completed, my symptoms were back. I also tried the interstim and it didn't do anything for me.

[Star B.]

Re: Uranamic testing (maybe she meant urodynamic) and scope?

Well, my insurance turned down the ankle stim anyway. Now my doc is back to pushing the interstim. Again, my issue is bladder pain, so I'm not going through this invasive procedure that's meant for urgency issues. I've seen so many doctors and once they run out of options, they always start pushing interstim. I'm tired. I need help with an actual issue and it just isn't going to happen.

[jen74]

Re: Uranamic testing (maybe she meant urodynamic) and scope?

Yeah, I think it is very irresponsible for doctors to push a treatment just to say you tried it, knowing it will not work for your pain. I have had the same thing happen to me. I was offered the interstim as well, even though my main issue is pain. The uro who offered it even said it probably would not help me at all but still was pushing it! I refused. Always hold your ground. I mean why would I put my body through an invasive spinal procedure that is Not going to help me just to say I did it??? It just is Not logical in my opinion.

I went to see a pain specialist and they mentioned a spinal procedure, I believe it was a spinal cord stimulator( Not interstim) that was supposed to help with pain. I have not yet decided on whether I will do this or not, I am researching it a bit first to see if anyone with IC has ever gotten relief from this.

But I agree with you on Not agreeing to the interstim, it does not help with pain.

Well, my insurance turned down the ankle stim anyway. Now my doc is back to pushing the interstim. Again, my issue is bladder pain, so I'm not going through this invasive procedure that's meant for urgency issues. I've seen so many doctors and once they run out of options, they always start pushing interstim. I'm tired. I need help with an actual issue and it just isn't going to happen.