Potassium sensitivity test

[carm2405]

Hello,

I just returned from my urologists and he set up an appointment for a potassium sensitivity test. I am a little scared after reading some of the posts from the website. I am scared that this test may bring back symptoms. I have been following the IC diet and have been feeling almost symptom free for 2 months. I just don't want to set off a chain reaction. Has anyone gone through this test and not had a lot of pain? Is it helpful in diagnosing IC? I don't know if I should have it or not. I'm really scared.

Thanks,
Carmela

[nanawaggs]

Hi, Carmela ~

I'm so sorry you're having difficulty making this decision. I can totally understand why, however, especially if you've been feeling well lately. I don't know that I would want to chance bringing back symptoms either. I was also frightened as you, especially since I believe the statistics say the test can be inaccurate. I was scheduled for one, but at the time my symptoms were so painful that my Uro would not do it that day. Since then, I was diagnosed during a surgery he performed so didn't need the test.

I believe many have written that they were so relieved to have the diagnosis and the doctor is supposed to immediately remove the solution and instill medication to stop any pain. Did you ask your doctor if this is the procedure they use? I've been told before that I didn't have to have procedures done necessarily when suggested if I wasn't ready and I offer you that same advice. If you are not confident and comfortable with your decision, you can always schedule the test at another time.

Take care and I'm sure you'll make the best decision for yourself. May you keep feeling great. Whatever you're doing must be working for you!

Hugs,

[Julie B]

Hi Carmela,

It does seem like a barbaric test, but the alternative is a hydro/cysto which sometimes is much worse. (Even though it actually helps others!)

If you are not quite ready for the test, you might ask your doctor if you can do only the rescue instillation. Some docs are actually doing it that way. If the symptoms stop, you have a pretty good idea that you have IC.

It will be wonderful to have a test for IC that could be included on a standard dip-stick UA. Hopefully that is in the near future...

Sending understanding hugs............

[carm2405]

Hello,

I'm thinking I have to follow my instincts on this one and not have it. I am feeling better and feel that I am healing on my own. He just said that IC does tend to get worse and I don't know if I am making a mistake by not getting officially diagnosed now and letting it progress.

If I do have IC it's obviously very mild compared to what I have read. I know I have to stick to the diet because my bout with paprika reminded me of that. Does IC tend to get worse and will I be making a mistake by not getting diagnosed? If I am feeling ok now should I just wait and see if symptoms get worse before moving forward with the test? I am asking for opinions since I know that no one can give medical advice but just want to see what others would do.

Thanks,
Carmela:help:

[ICNDonna]

The way the potassium test is done is they will instill a water solution; you won't be told when the potassium is added --- if the potassium causes pain, it is immediately drained through the catheter and an analgesic is instilled to kill the pain. The pain only lasts a very few minutes.

I suggest you verify with your doctor that this is how they do it --- then make your decision. The only possible problem I can think of is that if you don't have IC, it could be important to find out what's been going on. Some doctors are okay with making a diagnosis based on symptoms alone.

I was diagnosed back in 1975 by hydrodistention.

Warm hugs,
Donna

[Zygala87]

Nope I would not let them do that to me. I had a HYDRO instead and the Doctor took pictures of my bladder. No doubt about having IC for sure and found great relief just from the streaching of the bladder. That was just a personal decision for me. We all must decide what we think is best for us. Many people have had the potassium test without much trouble. My OBGYN did the HYDRO and I was " out" with no pain. Others have said they would never do it again. It's a decision only you can make. I feel if it isn't broken, don't try to fix it yet. Sending warm Hugs, keep us informed. Ziggy

[sissygirl]

I have learned at 46 to trust my instincts about my body (within reason).

If you are symptom free, why not postpone the test for a while? It will still be there if you have another flare and want to proceed further....that would be my thinking...

If you are feeling better, it seems unlikely to me that your IC is getting silently worse--sounds like you are treating it well with the diet....

Good luck with your decision....

[nottoc4]

I had been mis diagnosed with Overactive Bladder for 2 years before I got to my present Dr.
I had a Potassium Sensitivity test done and it confirmed what was wrong with me,IC
I did burn a bit afterwards but my Dr. started Elmiron rescue treatments for me the very next day.
The Diet,Elmiron 3x a day and Imipramine and rescue instills have me pretty symptom free.

[CheshireKat]

I had this test to diagnose if I had IC or not. I have to be honest, I did not like it ._. That, and if you have a mild/moderate case you should be able to tell once that potassium hits. Its a pretty bad pain (for me it was). However...It made my symptoms happen "full blast" I guess you could say. Ever since I have had that test all my symptoms started happening more frequently and I even gained one more -_- However I was diagnosed so that made me happy. Personally, I hate that test. I heard its actually being stopped quite soon because it doesn't always catch people with IC. Its your decision though! I heard the Hydro is useful. I don't know anything about it really though :c I hope you figure this all out!

[wagamama]

I had neither potassium test nor the cysto with hydro. My urologist said those used to be the "gold standard" for diagnosing IC, but they are starting to fall out of favor. If you look at the new IC diagnostic guidelines being considered by the AUA, they do not recommend the potassium test at all, and they recommend cysto with hydro only for "complicated" cases of IC where other conditions (like PFD, etc.) exist that may mimic IC.

I will emphasize that my symptoms are on the milder side: some pain with little frequency or urgency. My urologist diagnosed me with a regular cysto in the office (to confirm inflammation and rule out other causes like bladder cancer or stones), symptoms and a urodynamics test to rule out overactive bladder and pelvic floor spasms.

I know a lot of other doctors still use the potassium test, but it's not the only way to be diagnosed. If you're uncomfortable with it, you have other options.

[VickiB]

To echo Ziggy, this is a decision that only you can make. It's good you're taking the time to learn about the procedure & getting input from others before deciding whether this is right for you.

So, to answer your initial questions...
"Has anyone gone through this test and not had a lot of pain?" The worst part for me was the catheter insertion, but I was far from relaxed and may be partly to blame in that one. When the potassium hit my bladder it did hurt, instantaneous flare, however the moment I reacted the solution was drained and replaced with a numbing solution. This pain was of a short duration, similar to being stung by a bee. After, I was a bit irritated for the next 24 hours though not enough to stop me from anything. I had no further lasting effects from having had this done.

"Is it helpful in diagnosing IC?" Some say so, some say not. At the point I had this done pretty much everything else had been ruled out and IC was about the only diagnosis left. The PST was done more as confirmation than anything else I think.

If I am feeling ok now should I just wait and see if symptoms get worse before moving forward with the test?
This is completely your call and one that I'm afraid you'll really only know the answer to in hindsight. I have read here such varying degrees of experiences with this test and I wonder if it might have to do somewhat with where a person is at symptom-wise at that point in time. Before I was diagnosed my symptoms would swing back & forth between horrid torture for weeks/ months at a time followed by a week or two of feeling almost normal. It was crazy. When my Uro visit rolled around (wouldn't you know) I was in a good stretch and I thought about canceling because I thought they wouldn't have anything to diagnose by. Whatever I had -it wasn't 'happening' then. Anyway, I did go, I had the PST. Now I wonder if my not having had the terrible time of it that some others relate wasn't due to my having had it done while I was 'better'. To tell you the truth, I don't think there's any chance I could tolerate that test while in a flare. So in my case, I feel like having waited to do this test when my symptoms were worse would have been a mistake. But then,...it's not simply a question of when. Plenty of people don't have this test at all.

It's so hard to know what to do! I don't envy you in having to make this decision. It's seldom Black & White!

Vicki

[Snowden1]

I agree with sissygirl. You can always reschedule this later if you want to do it. You can always get a second opinion too. If you are feeling good why risk the possibility of getting worse? We all have to listen to that voice inside that is leading us.:)

[ck1]

I had this test recently and it was no big deal at all! I felt the most mild discomfort.

Like someone else said, if the solution starts hurting you, they'll drain it out very fast.

[Snowden1]

I just read in the ICA magazine that this is an outdated test that the Urology Association is saying is no longer necessary. One person said that the solution hurt, they drained it and put in the solution to help her and she was still in severe pain. This is one test they are trying to phase out. The ICA magazine was very good this time and discussed steps to start out with and continued so that uro's and patients had a set plan. I thought it was very good.

[snow_melt]

One person said that the solution hurt, they drained it and put in the solution to help her and she was still in severe pain. This is one test they are trying to phase out.


This was my experience. I knew the second the solution hit my bladder because it burned soooo badly. Even with the lidocaine/Elmiron rescue instillation I was in severe pain for the rest of the week. A lot of people are not troubled by the PST, but I was very negatively affected by it.

[gatorgal]

I would go with your gut. I asked my urogynocologist if she performs this test and she said she doesn't think its necessary, she usually performs the hydrodistension. I know, gets confusing with so many differernt opinions

[carm2405]

Hello,

I just wanted to check back in. After talking to the nurse I went through with the PST. I am still waiting for my results but it wasn't as bad as I thought it was going to be. I notice there was some mild burning and pressure but nothing that extreme. The test caused me to get irritated the entire next day but I went back to how I have been feeling. I am happy I took the test and hope he can make a diagnosis without having to do another test. Thanks for all the advice.

Thanks,
Carmela