Finally I have a diagnosis

[Selena]

Hello everyone,

I was just recently told by my doctor that I have IC, actually it was today. I first started with symtoms in 2001 it is now 2006. I have gone through so many flare ups that I lost count a very long time ago. I thought that I would never have a chance to live a normal life and I didn't know why.
I am happy that I finally know what is wrong with me it gives me great relief that maybe I can be normal soon.

Befor I was diagnosed I thought at different times that my "bladder infections" were caused by tea, oranges, vitamines, alcohol, vitamine "c", or sex, not exercising, and even bottled water because when ever I went camping I would drink it and get a flare up.

My doctor told me to research on the net for more information and I found this great website. I am glad that you are all here so that I have someone who understands, and I expect I will be doing alot of reading about IC so if there is some really good tips and things I need to know please let me know.

Thanks Selena

[ICNDonna]

I'm very glad you found us! The Patient Handbook at http://www.ic-network.com/handbook is an excellent place to learn about IC. You'll find the diet there, which is a very good place to start helping yourself get better.

Warm welcoming hugs,
Donna

[dg2901]

Hi Selena :hi:

Youre over the hardest part--getting a diagnosis. From here on out you're in control.
Remember that you're not alone in this battle--we're all here with you!

take care,
diana

[beachnut]

Hi Selena

I too am fairly new to this website. The people here are so helpful and supportive, it's just amazing. It is so hard to talk to people who don't know what we a going through. This is a great place to talk. So many helpful hints. In the past 4 days I have had almost no pain, because I am sticking to the IC diet, as boring as it is. It is worth avoiding the no-no foods to keep the pain at bay. Search this site thoroughly and you'll get answers to alot of your questions. There's alot to learn, as I have recently found out. I have only been diagnosed for 2 weeks.
God Bless
Sandy

[Selena]

Thanks for the hello everyone

I am not so happy to know I have IC. After reading a bit into it I guess I have discoved only the tip of the iceberg.

I am one person that is very angry that it took so long to diagnose. Over 5 years and my symtoms were very obvious. I have put so many drugs into my system for no reason. Especially when I was pregnant with my children, and who knows how that will effect them.

I have had the same doctor the whole time. I don't blame him but I am very frusterated with the healthcare system. I don't understand it takes over a week to see your family doctor and I have been waiting to see the uro for over 6 months now.

Yesterday I saw a gyno who gave me the diagnosis and sent me home, he told me to look on the net and he didn't want to give me drugs for it.

I have to say that my flare ups are better right now then they have been in the past but that can change at any moment I know that.
I have had it flare up so bad I couldn't leave even my bed for a week. I laid there with a heating pad on me and wondered if dieing would be better. I have gone at one time almost a year with out one.
Well thanks for letting me vent
Selena

[beachnut]

Hi Selena

I am so sorry to hear what you have gone through. I have been on the diet for a week almost and of the first time in months, I feel human. I can relate to the feel like dying part, I felt so desperate, and felt like I was useless to my husband and kids. I decided to take the advice of many here, that say, don't let the disease own you, own it!!!! Learn as much as you can about diet and treatment and go from there. If your uro is not giving you what you need, go elsewhere. I know my kids and my husband love me depite of the horrible days when I am totally useless to them. Please know that we are here for each other, and when you feel like crap, talk to us. It's not nice to know that others suffer like us but.....we can help each other because no one knows or can understand unless they have lived it.

Take care
Sandy

[mom2kk2006]

Welcome,

Wow I haven't been on here in awhile and came on last night for the first time in awhile and I'm noticing more Canadians on here:woohoo: You are on a great site girl, this site has done wonders for me. I've been on the diet since April and wow what a difference, I barely know I have IC rather than peeing more frequent than normal however I went from every 10-15 minutes to every 2 hours or so. The gals on here are great and I owe a huge thank you to all:pray: I was so angry like you are I even went into a state of depression but I've exercised and kept on going and I'm finally me again. All the best of luck to you.:)

[beachnut]

Hi Mom in British Columbia
Yes this is the best site I could have found . Being a newbie and all. What suggestions do people have for headache relief?? I heard I buprophen can be brutal on IC . How about Tylenol (acetaminophen)??
Since being on the diet I have been feeling well for 6 days now. Fingers crossed. Had small amounts of tomato sauce this week and so far so good. Next to chocolate I would miss that the most. Golden oreo's are my new favourite snack. I think I'll wiat until my treatment starts before I get too bold.
Sandy

[Selena]

Hi Beachnut
I am a bit overwhelmed by everything that can cause flair ups I never would have thought Ibprf caused flair ups. I am so glad that this website is here. I don't think that there is a support group anywhere close by for me so I am extremely greatful that I can log on whenever I have a question and actually talk so someone experiencing the same type of condition instead of trying to get an answer about something from someone who doesn't know.
I use pyridium (not sure I spelled it right) my Doc gives me bunch of extras. I also have T-3's, I don't really like to use the codine one for all I know it could cause flair ups too.
I think I am going to retire my bottle of Advil for a while and hopefully it will do me some good.
Selena

[beachnut]

Hi Selena

I have learned so much from just being on this site for 3 weeks. The diet really sucks but I am having no pain because of it. I had a wicked migraine yesterday and was too afraid to take anything. So I just went to bed. My doctor has given me no pain meds or any other meds for that matter, he is confident that this new treatment of Uracyst will work for me. I start that on Oct 30. I hope he is right. I have felt much better this week, I hope you do too. It is such a learning curve, and I 'm sure I will screw up occasionally and eat something I shouldn't. However I refuse to let this disease rule my whole life and I will not let it get me down anymore.. I have a life to live.
Sandy

[Sarojini]

Hi, and welcome to the site (a bit late) :welcome:

I'm glad you are doing your reading -- this will help you when you finally do see the urologist. I am sad to hear, though, that you are unable to begin treatment until then. That is so difficult, because beginning something is crucial to feeling better. However, trying the diet is too, and I'm glad to hear you're trying it and you already know what some of your triggers are...that will make it easier to personalize the diet for you.

Note that I said "personalize"... you will find that in some cases, you can eat something that another person cannot, or vice versa. Don't let it get you down. Keep working at making your personal version of the IC diet and I am quite sure your symptoms will improve. I know that avoiding certain foods for me is a definite "flare-preventer." :)

I'm sorry for all you've been through, but I'm glad you found us. We are a great, supportive community and having a safe place to vent is ALSO a great help to newly diagnosed (as well as us old timers)!

[javone77]

Welcome Selena! You were just like me...and many of us. Mad that no one could tell us what was wrong, then relieved to know what it was after years, to angry that it happened and overwhelmed when it sinks in. I still suffer from bouts of intense anger and I was diagnosed in February. But I also found out I could not have children the month before so I got a double whammy. But I have custody of my 4 yr old nephew so I guess I am a mom. I say this to say that God has a plan for all of us...it's just hard to see the purpose right now. But the sun will shine again. I see a little more of it each day. Peace Love and Blessings :)

[justJen]

Welcome! Glad you found us. Hope this site is as much help to you as it has been to me. Everyone on here is great :) Don't get discouraged I.C. is a tricky battle to fight but I know you can do it!
You might want to think about calling your doctor and asking for meds. A lot of the time they don't like to prescribe them.