Diagnosed last week

[lab queen]

Hello. I was diagnosed with IC last week. After reading many of the stories on this message board I see how fortunate I am.

The only symptoms I have is frequency and microscopic blood in my urine (and the irritablility that spending half the day in the bathroom causes). It started maybe 6 months ago and has just gotten progressively worse. Finally when I kept track and realized I had urinated 21 times in 24 hours I made an appointment with my PCP for last Thursday. By then I had done enough research I thought it might be IC and my PCP agreed. He got me into the urologists office the next morning. The urologist is out of town until tomorrow but he has a great PA that specializes in treating the IC patients (he has 91 of them). So Friday I had the potassium chloride test (he only got 15 of the 40cc in before my discomfort/urgency changed enough he decided not to put anymore in)and my first instillation of heparin, lidocaine and sodium bicarbonate. It was also my first catheter except for one after I'd had a spinal block. It releived the frequency sooo much but it burned like fire when I urinated afterward and most of that day. I was a little hesitiant but went ahead and had my second treatment today. No burning!! The plan is after a few more treatments to make sure they are working I am to start Elmiron and Atarax (at night only) and continue the instillations as needed until the Elmiron starts working, I'm praying it does! I am a Medical Technologist and work in a hospital so I spoke with a friend of mine that is a nurse and she agreed to do my as needed instillations. At some point I may learn to do them myself but I'm barely comfortable letting someone experienced do it, much less someone (me) who has never inserted a catheter.

Well, that's my story. This seems like a great group of people and I'm glad to know where to go when I have questions.

Melinda

[vm]

Wow. Sounds like your docs really have you on the right track - and quickly. You are very fortunate. :)

:welcome: I hope to see you around. You have found a wonderful place for support and information.

[lab queen]

Thanks for the welcome! I guess I also should have mentioned that I had done 3 urinalyses and a culture and took them to my appointments so I'm sure that saved some time too.

[work it]

Welcome Melinda, It sounds like between you and your dr you have a good start on this IC. I am so glad that your 2nd treatment had no burning for you. I wish you many more pain free days. Good luck

[ICNDonna]

:welcome: to the IC Network. It does sound like you're on the right track for treatments. I hope this will be the answer for you. If you haven't already, I do suggest you review the information at http://www.ic-network.com/handbook and put yourself on an IC diet. That single step can be extremely effective.

Warm hugs,
Donna

[Sarojini]

:welcome: to the ICN! Sounds like you have a great set of doctors that were able to diagnose you quickly! That's important -- the sooner you know what's wrong, the sooner you can begin treatment that helps.

A lot of people here have done the heparin instills and they've helped many people. After a few times having the doc do it, you may want to learn to self cath and do them at home, especially since you'll probably get sick of going to the doctor's office all the time. ;)

I know right now that possibility sounds pretty daunting, but as you get used to things happening down there it won't seem like such a weird concept, and learning to self-cath is really a LOT easier than you'd think. I have known how to do it for a while because I suffer from episodes of retention occasionally, and it really is a big help -- and easy. I can cath myself and get relief in just a few minutes, no big deal.

[lab queen]

I may eventually learn to self-cath, but for now I'm just going to have my friend at work do it for me. I'm already tired of going to the doctors office. It's 30 miles from home, in the oposite direction than work, making my morning drive 80 miles before work.

[Myli]

Glad you found us!! And it sounds like you are off to a very good start on solving this problem as well. Feel free to ask any questions at all or rant and rave. We all understand exactly what you are going through!

:welcome:
:grouphug:
Myli

[lab queen]

I was diagnosed last week with IC, my only symptoms are frequency and microscopic hematuria. I am seeing a slight improvement with the Heparin/Lidocaine/Bicarbonate instillations and am supposed to start Elmiron and Atarax in a few days. I know Elmiron can take several months to start working, and I am supposed to continue the instillations as needed until the Elmiron works (I am praying it will). Is there any reason not to try Ditropan to control the frequency? Does anyone take a combination of the two?

Thanks,
Melinda