new to all of this and a bit confused..

[gjsara]

Hello my name is Sara and I am 22 years old. This last Tuesday I was diagnosed with IC. my obgyn gave me the PST,which was to say the least very painful. That has to be the worst way to find out you have something.

I have suffered with frequent UTI's since I was 16. Every time I felt one coming on, I would go to the urgent care and they would just give me the antibiotics and I would feel better.

At 17 I had them for a year straight. I went in to the doctor one last time and he said I didn't have a UTI, but he would give me the medicine if it would make me feel better. After that I just got better. I felt like I was just being paranoid.

I didn't have much of a problem the next couple of years, but this year I have been treated 5 times for UTI's.

My grandma has IC. She has had "pain" as she calls it, for many many years. So after her prompting and seeing advertisments about IC in my doctors office, I decided to to ask her about it. She set me up for the PST test, which i failed miserably. By failed I mean she said I have IC. She wrote me a prescription for Elmiron and a list of foods not to eat, which is just about everything..... and sent me on my way. I feel discouraged and sort of like she didn't understand, or care about me or my pain or that she had basically just handed me a life sentence.

So with that I started reading about IC and I can't help but to see the difference in most peoples' symptoms and mine.

I get bouts where every couple of months or sometimes years I get what I thought to be UTI's. I sometimes have a pressure in my bladder. It does not really hurt, just a pressure like I have to go to the bathroom. I have no pain during sex, so I guess I'm confused could i have been misdiagnosed? Does this disease get worse with age? Am I in the early stages?

I'm sorry for all of the questions I am just so confused and don't know what to do.

Anything you can say to help would be wonderful. Thanks for taking the time to listen.

Sara

[annabella22]

Hi Sara,

I am so sorry you are going through this. I think it is very normal to feel the way you do and we have all been there before. You should take some time to browse through the patient handbook -

http://www.ic-network.com/handbook/

It has lots of helpful information.

I hope you start feeling better soon.

[Dreamlove15]

I also was just diagnosed with IC this past month. I am 23 years old, so I can definitely relate to being sick so young. I'm sorry your going through this as well. I had to go through quite a tramatic test as well to find out I have this not so common disease. I can definitely say when you find out you have something that isn't going away, it kind of feels like a part of your wolrd changes and its hard. But try not to get down, find some way to vent... I hope this board helps you as much as it has helped me. Feel free to message me if you ever want someone to talk to who can understand your pain. Anyways Take care,

Jamie<3

[karen10]

Hi Sara,
I'm also sorry you're going through this! I have to say though, your symptoms sound EXACTLY like mine! I had chronic UTI's for about 4 years and sometimes back to back. I had no pain with sex, (strangely until after I was diagnosed), and at one point, I even told my doctor that I didn't think I had IC! Everyone is different, but I have noticed that in some people there seems to be a link between chronic UTI's and IC. My doctor told me that I had a mild case, so I'm hoping with treatment, I can keep it this way! Staying on the diet was very helpful for me. There are lots of things you can try if Elmiron doesn't work. Keep reading here, there are so many people with many different stories. Some people have had IC for years and are doing very well! Do lots of research and stay positive! :smile tee

[ICNDonna]

I'm glad you found the IC Network. The Patient Handbook will help you learn more about your disease and will help you with diet.

Warm hugs,
Donna

[GriffsMommy]

:welcome: to the IC network. I'm sorry you were just diagnoised with IC. Once you start reading on the boards and patient handbook you will notice that everyone's IC is so different. Some just have frequency, urgency, and pressure. Some people have mostly pain and not as much frequency and urgency. Some people have painful sex and some don't. My dr's believe the PST to be a pretty reliable test to diagnoise IC. It is so great to talk to people here who have an idea of what you're going through but we each have our own little twist to the IC puzzle. I hope you start to feel better soon.

[lan]

Hi Sara,
As the others have said, IC symptoms vary from one person to the next. I have a constant stingy, burny feeling in my Urethra/bladder that makes me feel like I need to go. I never have stabbing or cramping pain, but some people do. Elavil helps to subdue my symptoms and I am able to exercise and have sex comfortably. I hope that you will feel better soon. Linda

[SharonA]

Sara...:welcome: to the ICN...:):):)

The one thing that is constant about IC is inconsistency. There are almost as many ways it presents itself as there are people who have it.

[tspun]

Hi Sara
I am also new to IC and am suffering the same symptoms you are-- pressure, and a feeling of fullness but I have lots of night time bathroom trips along with the other symptoms. It has helped me to read alot of the posts...I finally feel like someone understands what I'm going through and I'm not crazy. My first step is changing my diet--this is huge for me because I've always ate what I wanted. I return to my Uro on December 27th for Urodynamic testing...but he has already told me he believes its IC.
Good luck to you....we will get through this...