Hi everyone! Please read!!!

[Jessalyn]

Hey everyone!

I just got back from my urodynamics and potassium test. The urodynamics was uncomfortable and I am glad it is over. The pottassium REALLY bothered me and was very painful, so I am assuming I have IC??? Nothing was prescribed to me, but hopefully it will be on December 7th, which is my followup and we will discuss the results. I am concerned because I know many have success with Elmiron, so I was putting some hope into that, but the nurse told me that you have to put it in intervenously through a catheter either yourself or at the clinic three times a week....WHAT!? This is really upsetting to me and would rather deal with pain than have a catheter so often. I just had one and it was very painful and I am sure I will be in pain for a few days. Any thoughts on this?

Is this pottassium test a good sign of IC!?

Thank you!

[Annie2]

Hi Jessalyn,

I am glad your tests are over and you can now begin the treatment process. Certainly hope you quickly find just the right med/treatment for you and you will be feeling so much better soon!

I was also diagnosed with the Potassium Sensitivity Test. Today many urologists feel this test, along with other tests to rule out other causes of symptoms, is good for diagnosing IC. Other urologists insist upon a cystoscopy with hydrodistention for diagnosis. Since there is not yet one specific and universal test for IC, it really is a matter of your uro's preference as to which tests are used for diagnosis.

Elmiron is an oral medication for the treatment of IC. The FDA has approved the use of Elmiron for oral administration. It does help many of us but does take several months of use before it becomes effective. Because it does take quite some time to achieve success with Elmiron, some urologists have started using Elmiron in bladder instillations. The Elmiron is put into a solution and, using a catheter, is put directly into the bladder. Some urologists now feel that by placing the Elmiron directly into the bladder the medication goes directly to the target area and this will provide faster results than by taking it orally and waiting for it to help the bladder. This method of administration has not yet been approved by the FDA so it is still considered an experimental use of Elmiron. We are hearing of more and more doctors using Elmiron in bladder instillation treatments. You need to talk to your urologist about all the treatment options and decide which treatment options will be right for you. I would suggest you read as much as possible about IC treatments before your next appointment so you will be prepared to discuss them with your doctor.

Though I am sorry you have IC, I am glad the long and difficult period of waiting for diagnosis is over for you. Hope you will be feeling better very soon!

Annie

[work it]

Annie explained it very well. I started with the elmiron instills but that was so uncomfortable for me that the uro then had me start taking it orally. I take 3 100mg in the morning and 3 100mg in the evening.

[VickiB]

I was diagnosed with the potassium sensitvity test too. Well, that and a long history of bladder symptoms. Plus when you add in the direct link I experience between food & pain, that pretty well nailed it!

I take Elmiron orally, 100mg, 3 times a day. I've been on it for almost nine months now. Only recently did I begin to notice I can eat a bit of some foods which in the past would've caused me to be in pain.

Glad to hear your appointment went well. Yep, that potassium test can be fairly painful! Hopefully with your follow-up on the 7th you'll get some answers and a treatment plan, then you'll be on the road to better days!

Vicki

[Katrina]

I was diagnosed with a potasium test and I screamed :grouphug: Elmiron comes orally and can be inserted with a catheder to help it work faster since....most don't want to wait a full 4-to atleast 6 months for any improvement. There is much depating as to a fefinate diagnoistic tool for IC. The trueth is right now some debate Postasium and some debate the hydro cysto....so with both debated it is as good a tool to diagnose you that we have right now:(
I hope you can find way to bring your pain down. Hope you feel better soon!!!!!
:grouphug:
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

[ibtracy]

:welcome: to the ICN. Like all the others have suggested, ask for the oral version of Elmiron. There are many other bladder instillations for pain and rescue therapy. Sorry to hear you have IC. I never had to endure the potassium test, thank goodness, I had already been on Elmiron too long for the test to be a true "test". I hope you're able to take the Elmiron orally. I too get very sore from the catheters. It's not fun, is it? Hang in there...

Tracy

[Cricketmk3]

I did not have the potassium test thank goodness. My doctor diagnosed me via a cystoscopy. He started me on Elmiron and Microdantin and pain meds before he even did that. Basically, he took my word for it and started treating my pain immediately. Thank God for Dr. Rosen! www.rosenurology.com

[vm]

What country do you live in, Jessalyn? I ask b/c originally Elmiron (pentosan polysulfate) was administered intravenously. Now it is used orally and by instillation into the bladder, too.

[Sarojini]

I agree with the others... ask your doc for the oral version of Elmiron. It now comes in a capsule form that you take each day. Some doctors will also supplement that with Elmiron instillations (where they place Elmiron solution directly into the bladder via catheter) to try and "jump-start" the effects, as oral Elmiron can often take 6-12 months to be very effective. However, I have only used the oral form, and it is definitely helping :)

Good luck :) :grouphug:

[Katrina]

How r u doing? Can you give us an update? Hope you are feeling better!