finally diagnosed--almost!

[Nadine_in_MA]

i went to my urologist last night and was told that he is almost sure I have IC, but I have to have a potassium test first--which I am dreading. Tonight, my 2-year-old daughter jumped into my lap and landed--you guessed it--right on my bladder!! :yikes: Now, the pain is sooo bad that my entire midsection is throbbing and pain is starting to shoot down my legs (keep in mind I have fibromyalgia, and pain goes crazy when I get hurt). My fibro has been in a huge flare lately and so has the IC, and I think they are just feeding off of each other. I am hoping to meet lots of new people that can understand what IC is like. I have posted here a few times before, but now that IC is more a reality than a guess now, I need all the support I can get. Going off of chocolate and coffee are going to be hard for me, but I tried to turn that into something positive by joining weight watchers online. We'll see how it goes!! :dance:

Love and hugs,
Nadine :loco:

[Sarojini]

Well, let me give you a second :welcome: to the ICN as an almost-surely-diagnosed patient ;)

I've never had a potassium test, but I have heard that you should not suffer much, because after the test is over the doctor should drain your bladder immediately and then instill an anesthetic solution to relieve the pain caused by the KCL. `Just try to relax and think that you will finally have the answers for sure -- and that then, you can start the treatments you need to start getting better!!! :)

I am happy to hear you're taking the IC diet seriously, and I really admire your decision to turn it into a good thing by joining Weight Watchers!! :) That's great -- keep us posted on your progress. I am sure you will find at least some relief from the diet, as most of us do.

Good luck, and let us know what happens... no matter what, we're heere for you :grouphug:

[VickiB]

Hi Nadine,

I can understand your worry about the potassium test. The idea of putting something like that in an already unhappy bladder is truly a scarey thought! I had the test, and while not a barrel of fun, it wasn't altogether unbearable. They told me they would put two different solutions, one at a time into my bladder. I would hold them for ten minutes each, and they'd evaluate the pain each caused. Well, when the potassium went in, after my initial thought that 'geez, that hurts!' Was, 'Oh my God,...ten minutes?????' But they drained it out immediately following my reaction to it, and like Jen said, installed an anesthetic solution.. Guess I thought they might actually make me lay there with that in me for ten minutes!

I hope all goes well for you!

Vicki

[SaraNicole]

Hello and Welcome I am a newbie as well and just diagnosed myself. I have IC and endometriosis. I can totally understand the pain you are feeling. I also have small children 3 all under the age of 5 so I know what it is like to have them wanting to climb on you. I know you are scared, but just know that you have alot of people who are very smart and are willing to help you with any and all of the questions that you might have. I have found this pain to be so hard and it is so nice to know that you have people to talk to that honestly can undersdtand what you are going through. If you ever just need a friend feel free to e-mail anytime. SwtSaraNicole@wmconnect.com I find this to be so difficult sometimes with all of the pain it makes it so hard when you have small children and you don't feel like you can truley be able to have the fun you want to with them. I hope to hear that you start feeling better soon. I will keep you in my thought and prayers and please let us know how you are doing.
Love,
Sara

[Katrina]

:welcome: to the ICN!
I was diagnosed with Potasium test....it is no fun at all but atleast it is over pretty fast. Wanted to let you know...you can have white chocolate! Your plan sounds like you know what you are doing. Please let us know if we can help you with anything. Sorry about your daughter's jump.

:kiss:

[JAMIEL]

Welcome to the ICN!

My mom has fibro so I know how painful it can be. That alone can be debilitating so along with the IC it must be @$@$@. Hopefully if you get the IC diagnosis after the potassium test the doctor can help you. The one thing that my mother does for the fibro is she is on a strict diet which does not include chocolate or coffee so maybe being off them will help both issues.

You will find tons of info and support here! There is a great book by Dr Robert Moldwin (The Interstitial Cystitis Survival Guide ) that you might want to get. It is a very informative book and he is a great doctor (he is MY doc)...

There are live chats on alternating mondays and tuesdays (check the chat schedule) which can be very helpful and fun too!

We are here for you!

Lots of Hugs,

Jamie

[Dee74]

Nadine, I was just diagnosed Thursday. I haven't gone through the potassium test, and since I have already been diagnosed, I'm hoping to avoid that completely!!

I also have Fibromyalgia. And the same thing happens to me.. one seems to feed off the other. If you ever want to vent, I'm all ears!!

I'm ALSO an online Weight Watcher member!! We have alot in common here lol
If you ever visit the message boards there, my SN is Daligani :)

[shinana]

I am not sure if I am scheduled for the potassium test or not. What are they looking for with this procedure. My Dr told me he has a few procedure he would like to do, however I am not sure of this one.

[VickiB]

It is believed that when you have IC, the protected layer in your bladder has been compromised. With the potassium test, the theory is that a normal bladder should not be affected by the presence of the potassium because of that protective layer. If it's put in an IC bladder, where that protective layer basically leaks, the potassium causes a 'reaction' (pain to be more specific!). So, if you react, they feel it's a good indication you have IC.

This is not the only way to look for IC, so your doctor may not choose this method for you. I think the main reason they used it to diagnose me is that my insurance didn't cover any of the proceedures, and this was both fast & inexpensive.

Vicki

[Myli]

I hope you don't have to wait very long to get past this test! At least you will have more information about what is wrong. Knowlege is power. It will open the door to finding treatments that help.

Dealing with three kids under age 5 should be cause for a combat heroism award!! How young mothers cope with the needs of their children when burdened with a disorder like this is beyond me. Let alone be burdened with more than one such affliction. Mothers simply aren't allowed to be sick. I'm sure there is something in the fine print on the Motherhood contract that covers this. ;)

Please let us know how it goes! :grouphug:

/hugs
Myli

[mayray518]

VickiB is so right. When I got diagnosed in 1994 there was no potassium test. wish there would have been. The only thing they could use was the hydrodistention. Good luck to you