HELP! Uro #3 wants me to do Potassium Test!

[DonnaReagan]

Help me, please ! My new uro (#3) wants me to endure the dreaded Potassium Sensitivy Test.

This is despite the fact that I have had two cystos + a hydro (w/ pics) indicating that yes indeed, I have IC!

My question here is: WHY? Why on earth is it necessary for him to put me through that?

His response was that "we don't want to leave any stone unturned". Well - I didn't say so at the time - but I'm thinking, "Yes we do - especially if there's a fire breathing dragon hiding underneath that rock!"

He also said that "That way, if anyone asks in the future if I've had a potassium test - that I can say 'yes'". Who cares? Why do I have to have this test to PROVE to anyone else? I KNOW I have IC.

I'm pretty sure I'm going to decline his nice offer to pipe the equivalent of acid into weeping, bleeding, spasming bladder. "No, Thanks, I'll pass". But here's the deal...

Since he's a new uro - I would like to set the tone & let him know I'm not just being a "difficult patient" because it gives me something entertaining to do with my time - but that I actually have logical reasons.

So - in my long-winded way I'm asking:

Are there any BENEFITS to doing this test? Considering the fact that I've already been diagnosed TWICE from two different uros - what possible benefit does this have? If I can assert to him that there is no additional benefit AND that the potential for my pain to increase even after the test and despite his additional kind offer to shoot a little lidocaine in there - then I won't feel the least bit wimpy about saying,

"NO!!! NO WAY - NOT GONNA HAPPEN - TAKE YOUR POTASSIUM ELSEWHERE - LIKE IT OR LUMP IT!!!!!"

Thanks in advance for your feedback. I need all of it I can get - I trust it will make me feel stronger!

DonnaReagan

[dminton]

I agree with you; I don't see why you should do it. I can certainly understand your concern. If there were a clear reason to do the test, but you have already been diagnosed twice! My understanding is that the potassium test is for diagnosis, I'm not aware of any other reason to do one.

Please don't do it if you aren't comfortable with it, and if the doctor thinks less of you for not agreeing to do it, then I think you might want to reconsider using him in your health care. This is YOUR body we are talking about! You are the one who has to live with the pain afterwards, not the urologist!

I hope this helps, and I wish you the best of luck in your IC healing.

Diana.

[dyno]

Donna,
I am curious who this Uro is. I also live in Fort Worth and the uro I am seeing since summer of 2002 has been working out really good. When I first went to see him, I took medical records from my diagnosing hydro/cysto in the mid 70's with me. I filled out their questionaire before my appt., and I gave them a urine spec. He knew I was terrified to be there and was just great. He said he can just about tell from talking to someone if they have IC. With all my history and the first cysto he just wanted to send my urine to check for cancer, he also said he didn't expect that, but just had to cover the bases. He said you are Classic IC when I told him that another uro in the late 80's or early 90's told me there was no way I could have been diagnosed at 16. As I told this Dr., my symptoms don't lie all these years and he asked me what I wanted. At that point I went real conservative to start and asked for Hydroxyzine and an antispasmodic to help me in a flare. Since then I have also went on Elmiron. There was never a mention of another hydro. I had just had surgery about a month before seeing him and had my bladder stetched out with urine during surgery and after when I couldn't go and that helped some too and all he said was that when I felt I needed another one, he would do it and I would be at the hospital and given a general, my first one was a local. The other thing, my uro used to be Chief of Urology at Harris.

So point being is not all Dr.s would insist on that if your hydros and history give you an IC diagnosis. I don't know if I would want to go through it either.

Feel free to PM on this if you want to.

Jolene

[DonnaReagan]

OK Dyno -

Now let me get this straight...

You have had a hyro with only a LOCAL anesthetic??? That sounds crazy! You are a much braver soul than me! How was that experience?

Also - if I read correctly - you had your bladder stretched out with URINE instead of water? Is that more beneficial than using water? I'm interested because I will be having a hydro as soon as possible and would like to explore the options. (Hey - BTW - was that YOUR urine they used..or did they pass a bucket around the operating room and have the staff "pitch in" to get you good & stretched out??? OK - I apologize. My sense of humor is one of my best coping mechanisms and you have to admit - this disease offers lots of opportunities for "bathroom" humor! I hope I didn't offend you)

OK - back to being serious...
Also - do you know if they ever use anything else? I'd like to know if they instill lidocaine during a hydro - I think I'd be interested in that 'cause that sounds comforting. But need to consider long term benefits.

Thank you, IC angels!

DonnaReagan

[vm]

I sure wouldn't do the potassium test if I had already had 2 cystos w/ hydro that diagnosed me with IC!!!! eek What is he thinking???

[Iris]

I agree with the gals, I know I would not have it done, if I had already been diagnosed. It sounds painful to me eek not something that I would consider. Let us know how you get on, hugs Iris. hi grouphug

[lotsofgirls]

Hi Donna,
if you are already dx then the potassium test is a ridiculous idea. I had the darn thing a few years back and it sent me into a horrendous three week flare. Ruined my summer vacation. I would never ever go through it again, at least with a hydro the bladder gets distended and some capacity might be recovered.

What a nutcase that uro is, is he really board certified?

Cath

[dyno]

Donna,
It was not my choice to have the hydro without a general, that was just how they did it and it hurt more than I can describe and I was 16 at the time. Between that and the Silver Nitrate installs I had while in the hospital for about a week then, I was really traumatized.

As far as the urine stretching out my bladder. It was just that for years I only voided 30-60 cc at a time. I hadn't had treatment because I didn't go back. I just visited the bathroom alot. Then when I had to have an emergency gall bladder surgery in the summer of 2002, they ran IV's on me overnight until my surgery that just tore my bladder up and gave me tons more fluid than I was used to handling. I knew when I had surgery there would be a good chance they would have to cath me. Well my experience with a foley cath that stays in when I had my kids was that my bladder didn't want to start working again and I left the hospital then with a cath in. So I asked my surgeon in 2002 if they had to cath me to do a straight cath and not leave it in, just drain my bladder and take it out. So that is what he did. After years of voiding the small amout I did, my bladder got stretched to 400 cc with urine during that surgery and then again after surgery, I couldn't go again and a few hours later I had to be straight cath again with another 400 cc. then. So it was just that my own urine stretched it when I couldn't go. A hydro of sorts.

I honestly don't know about the lidocaine during surgery. I think I have heard of sometimes them doing an instill during surgery.

Hope that answers some of your questions.

Jolene

[ICNDonna]

Have you had records of the hydrodistentions forwarded to your new doctor? If not, then he may feel a need to confirm your diagnosis. And if that's the reason for the test, it would be easier to have your records sent to him than to have to repeat diagnostic procedures.

If you can't get the records for any reason (I can't imagine why not), then the potassium test should be easier than hydrodistention. Most people who have the potassium test do report feeling pain with the test, but that the pain leaves after it is removed from the bladder and an analgesic instilled.

I know it seems like we should be able to just tell a doctor about test results in the past, but unless the doctor knows you well, most will want some confirmation for the medical record.

Sending warm healing thoughts,
Donna

[dyno]

Here is the website to my uro's office.

http://www.uant.com/


Jolene

[classics]

Hi DonnaReagan.

My advice is to tell your new urologist no to the potassium test. Make sure you talk directly to him and not office staff because hearing it directly from you will make more of an impact. Next, get a copy of all your test results from the medical records departments of the urologist who diagnosed IC. This may take some time and may even cost you (some places charge, mine did), but it's well worth it to have your own records. Take the records to your primary care doctor; if you don't have one, please get one asap. Have the primary care doctor make copies (you keep the originals for home files). Your primary care doctor should be able to recommend a urologist. If you originally did get a referral from your primary care doctor, make sure you contact him/her to tell her what is going on.

Please keep posting and let us know your progress.

[Jessica in Arkansas]

Dr. Muldwins Guide to Surviving Interstitial Cystitis took a group of 32 diagnosed IC patients and gave them all the PST (potassium sensitivity test). 15 of those tested had no response burning/pain upon instillation, they DID NOT react to the PST but they in fact DO have IC!! DEM' NUMBER'S ARN"T GOOD!!!!
If the PST was the be all of diagnostic tests so many of us would go without being diagnosed and treated, it would be a classic "it is all in your head" and we would still be treated with anti-biotics reagurdless of negitive cultures "to be on the safe side!"
I will not let my Uro do the test he asks every time I go in to see him if he can do it, sure, if I can cut open his arm and rub salt in his wound I will do it!! As for now the Hydro/Cysto and the evidence of glommerulations (pinpoint bleding on the surface of my bladder) are enough to satisfy me I have IC!! I live with pain almost every minute of my life and expect I will until some knowledge is found to help us sufferers.
They really need to do away with this BARBARRIC test and use what really is a good diagnostic test, the Hydro with distention/cystoscopy and even a biopsy.
It is up to you but I agree, why wake a very angry and lightly sleeping dragon when you can avoid him all together by walking the other way!!
Good luck and trust in yourself!!
JessicainArkansas

[DonnaReagan]

Thanks to you all for your input & support.

I will NOT be having the BARBARIC and UNNECESSARY potassium test!!!!

I don't know if doc still wants me to have it or not. His surgery scheduler called me at the end of last week & set me up for a cysto/hydro for next week. I thought she'd say something about the potassium test & she said she didn't have anything written up about it.

I have no appointments scheduled prior to the cysto/hydro and the thought of having the potassium test AFTER the cysto/hydro would be even MORE ludicrious!!!

So - if he does push for it afterward - I'll definitely be moving on to a doc with a brain in his head.

I'm going to go ahead & let him do the cysto-hydro on me because he got it scheduled so quickly AND because I'm thinking it's probably a no-brainer type of procedure for a urologist & there's no cutting involved.

I'm going to give him a chance to redeem himself. If he doesn't - then I'll be moving on.

Thanks again to everyone for your support. And a special thank you to Jolene (dyno) for all of your PMs and assistance. If I do need another uro - you'll be hearing from me again on that one!


DonnaReagan

[dyno]

Donna,
If he is doing a cysto/hydro there would be no need for that potasssium test. So I don't blame you for standing your ground on that one. You will have to let us know how things go. Praying it will go good for you. Hollar if you need more help.

[jillian]

I had the K+ test back in 1997 and it came back negative. I had a flare after the test (hours after that lasted for three weeks). I was one of those atypical people. Don't have it done. I would have gone through the hydro, which I ended up having anyway (three months later). This is a screening tool, since you have IC..you don't need to be screened!!!