diagnosed a week ago

[maillady]

Hello! I was diagnosed using the potassium sensitivity test. I am a little worried now that I saw on a related website they do not consider that reliable. I have been on Elmiron and haven't noticed any change yet. I thought I had endo and had a laparascopy done in november and that revealed no endo. So I went to a urologist last week and he said with all my symptoms that I had IC. I really hope I do because I have been in and out of hospitals over the years and have been diagnosed with honeymooners cystits, PID, UTI, and now this so I am hoping I am not doing the elmiron and the diet in vain! Sorry if I am venting I am kinda frustrated (not to mention caffeine deprived! LOL)

oh also I am going to have a colonoscopy on the 15th of feb. I heard that elmiron thins the blood can I still have the colonoscopy? (my mom died of colon cancer and the doc wants me checked out.)

Thanks for any input!

Maillady

[emartin890]

Hello! I was diagnosed using the potassium sensitivity test. I am a little worried now that I saw on a related website they do not consider that reliable. I have been on Elmiron and haven't noticed any change yet. I thought I had endo and had a laparascopy done in november and that revealed no endo. So I went to a urologist last week and he said with all my symptoms that I had IC. I really hope I do because I have been in and out of hospitals over the years and have been diagnosed with honeymooners cystits, PID, UTI, and now this so I am hoping I am not doing the elmiron and the diet in vain! Sorry if I am venting I am kinda frustrated (not to mention caffeine deprived! LOL)

oh also I am going to have a colonoscopy on the 15th of feb. I heard that elmiron thins the blood can I still have the colonoscopy? (my mom died of colon cancer and the doc wants me checked out.)

Thanks for any input!

Maillady

Maillady,
Welcome!! I am new too and have beeen going through the same as you trying to get a diagnosis.. Mine was also done with the PST test.
So I am trying to suffer through the diet too ARGHHH!!!!
As far as your colonoscopy.. YES the elmiron has blood thinner properties, I am having a Radio frequency procedure on my back next Tues and they told me not to take the elmiron for 5 days prior.. But I am not a doctor or nurse so check with your Doc..
I have not started my elmiron yet.
Had a rescue elmirom instill after the PST and it made me really sore after I peed the first time. But I am better today.. I am still drinking my coffee just can't do it without it!!! I take 4 preliefs drink a ton of water with it and I seem to be ok.. I have not eaten anything else on the no list.. So I will just see what I can get by with on the coffee LOL
Maybe since we are both new at this we can watch each others posts and learn together!!!
Sue

[Katie14]

It sounds like your urologist agreed that your symptoms pointed to IC. From what I understand some doctors are diagnosing IC by symptoms and history alone. I think what one of the concerns is with the PST is that people known to have IC have had a negative PST. The numbers vary depending on where you read but one reliable source said as many as 40 of 100 people with IC may test negative with the PST. They were concerned that doctors would refuse treatment to someone who tested negative relying on that test alone for diagnosis.

As to the colonoscopy, I had one in January and my gastroenterologist was aware I was on Elmiron and did not consider it a reason not to do the test. Just thought I'd tell you too I was so well medicated during it I don't remember a thing!

I hope you get relief with the Elmiron and diet!

[Kara Isabel]

HI!!

And welcome

I hope you feel better soon!

Kara

[ICNDonna]

to the IC Network.

The PST, along with symptoms, is usually a reliable diagnostic tool. An IC diagnosis is also made partially by ruling out other potential diseases.

Warm hugs,
Donna

[maillady]

hello!

thank you for replying to my post! You all have releived me of some fears like it being all in my head thing which I have been told in the past, one doc told me to grin and bear it!

Katie did you have to stop taking the elmiron before the colonoscopy? That's a releif that I'll be medicated! LOL don't think I would like the doc if not!


Hugs back to you donna! ((((((((((((hug)))))))))))

Thank you Kara K!


Hey Sue!

I tried having one cup of coffee in the morning but still had ibs so stopped and tried the fake coffee today! Not too bad tastes so good I didn't need creamer! I will let my doctors office know before hand. I too am suffering through the diet but I have ordered a book that is supposed to be a guide on cooking for the IC diet. Can't remember the author's name at the moment I will let you know when I get it!

Take care everyone and thanks!

maillady

[rosesitty]

Maillady - I know the diet is challenging, it seems like there's nothing to eat, but it's very healthy and the by-product is some weight loss. Also, the Elmiron takes awhile to work, usually any where from 3 months or longer. I just started on the Elmiron about 10 days ago - I've had IC for three years, but I've been in flares for the past 3 months, so my uro wanted to give it a try. Regarding my diagnosis - my uro diagnosed me from symptoms and when she did an office cysto, she noticed my bladder was very inflamed. I haven't had a PST or cysto with hydro -- and still have IC symptoms!!
Hope you find a regime that works for you!