A bit confused about IC diagnosis

[sweetpea2555]

Hello everyone!
I'm a bit confused and I was hoping someone out there can relate. I posted for the first time a few weeks ago when I was told by a doctor I had IC. I got so much support and good advice and I was so greatful to find such a great place for information and support. No one else understands sometimes and it's very comforting to talk with people who understand the pain and other symptoms I am experiencing. It's also nice when I can't sleep like right now because of pain and going pee every 15 min or so to come here and read the boards and handbook and everything makes so much sense. I also found great tips that really help alot.
Anyway, this is whats so confusing. I found a great doc who strongly believes in IC. He is very understanding and the staff is great. They work me in right away when I need it and said they want to make me well again ASAP. There is only one problem. He said I don't have IC. because I didn't have any ulcers in my bladder just inflamation. I was diagnosed with painful bladder syndrome with cystitis and hematouria like before. Except now, I have a double kidney infection and a bladder infection to go with it.
I felt like such a fool because he said I didn't have IC after all and I was telling everyone I did. Well I didn't come back to this site for a few days until tonight when I was doing some more reading about painful bladder syndrome and I found a part that said Painful bladdr syndrome is also known as IC and chronic pelvic pain syndrome :hmm: My doctor said it's not the same but the symptoms are the same and treatment is the same but when he gave me Elmiron and the IC diet and some ditropan he says this doesn't mean you have IC because you don't. I just don't get it.
I don't want to come here saying I have IC when I don't and I don't want to try to give someone advice about IC if I don't have IC, or do I have IC and it's just not recognized as IC because of one small detail?
Has anyone else heard of this?

[theclownster]

Hi sweetpea! I'm sorry to hear that you are getting confusing messages from you doctor. It can be very difficult to make heads or tails of things with all your mixed messages. I think that IC is different for everyone and I've heard that some people have ulcers in the bladder and some don't - but both still have IC. Hopefully someone will see your post and verify this info (as I may not be right). With this conflicting information, you might want to get a second opinion so that you are confident you have the correct diagnosis.

Regardless of what your "official" diagnosis is, you are still experiencing the same symptoms that we all have. You are always welcome here and I'm sure everyone here will agree. Feel free to post anytime. There's not many places you can get this kind of support. You are always welcome here.

Sending you warm healing thoughts!

Hugs~
Jennifer

[ICNDonna]

Not everyone with IC has ulcers. Have you had a hydrodistention under anesthesia? Or a potassium sensitivity test? Those are the two most accurate diagnostic tests for IC. I know you're feeling you're in a tough spot, but if your doctor is treating your symptoms and if you're feeling better, it sounds like you have found a good one.

It doesn't make any difference if you are "officially" diagnosed as IC, or if you just have a painful bladder, or if someone close to you does --- you are always welcome here --- and what helps you just might help someone else --- so please feel free to share what works for you.

Warm hugs,
Donna

[hazellin31]

Oh my god sweetpee, I totally know what you are saying. I'm completely new here and honest to God I was thinking the same thing you were because my doctor told me he "couldn't diagnose me with IC" because he doesn't think I have it even though I have all the symptoms. But, he told me that he would treat me like I had it and put me on Elavil and Detrol - I'm still waiting on the Elmiron. I also felt weird coming here but seriously I don't care what they call it, I know I have it and I know how much it has helped me coming to this site for information. I'm sorry I can't offer you more advice about your specific situation, but I had to post to let you know that someone out there understands!

[ICNJess]

Hi SweetPea,

Well I don't care what you call it, it's still IC. You can call it "painful bladder syndrome with cystitis and hematouria" or IC, it's still the same. If you break down what "Interstitial Cystitis" means, it comes out as "Inflammation within the bladder wall"...which causes pain. Hematuria refers to Red Blood Cells given off from something. Well when you have IC, your bladder is literally bleeding. Cystitis is inflammation of the bladder. All of it put together is a fancy way of saying IC!!!

It doesn't matter how you say it, or what you call it, it's still IC, and you belong here, among us ICer's who can help you every step of the way. Hang in there, and welcome!!!

Hugs,
Jess

[vm]

You keep coming back and posting regardless of what your doc labels your condition. If you have these symptoms, we can all relate and would love to continue supporting you. :kissing:

[shennan]

http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/index.htm

[sweetpea2555]

I just wanted to thank you for your support. This site has helped me out alot and I have heard by one of my doctors its all the same thing. I was just so upset and bummed out because I am tierd of being sick. I still have my infection but I'm not going to give up. Thank you for making me feel welcome and I hope I can help someone else too.
Donna thank you too you help everyone so much. I hade a scope that lasted less than 5 min. and was told I was inflammed inside.
Whatever I have, It does sound like IC. and my symptoms are very real. It truly is amazing how many suffer from these symptoms and it's very sad many are not getting the help they deserve because of lack of understanding and knowledge.
Thank you all so much again sending lots of hugs to` everyone suffering :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: