diagnosed this week...having a hard time...sad and scared

[lashley]

I had my first "bladder infection" when i was 14. I'm 22 years old now...and was finally diagnosed this week. 8 years ago was my first sign of symptoms ever...and i can remember the exact day and the exact pain so clearly. I ran a mile that day...in that pain...because my teacher thought i was making up an excuse to get out of p.e. i feel like that mile lasted the entire 8 years...because i feel like that's exactly how i've been treated up until now. So, needless to say...the depression and anxiety...insomnia...side effects...have been pretty intense. after having these reoccurring infections for two years my mom finally found me a urologist. i've been treated for urinary tract infections...with antibiotics for the past 6 years. I went to the most recommended dr. in my city...i was so young at the time and didn't feel comfortable seeing a male dr....and this urologist was female. we didn't realize that was a rare trait in urologists....and the reason why she came so highly recommended. she basically gave me the run-around for 6 years straight. when i went to college 3.5 years ago...she decided to tack on a guilt trip on top of her run around routine. apparently i just wasn't doing enough to help my "condition"....the condition she had yet to find a diagnosis for. basically....she was taking out her frustration with my urinary problems on...me. anyway....tons of antibiotics and 3 years later led me to about 3 months ago...when i dropped her sorry butt and switched doctors. my new doctor ran more tests on me in the past month than she did in 6 years. Come to find out the answer was there the whole time. Psychologically...this has been just as traumatizing as the physical aspect of it. It's a big shock that i've gone through this for so long because of an ignorant doctor. As if the physical pain wasn't enough....i got mental and emotional b.s. to go along with it. I've been told i was lazy, a hypochondriac, clinically depressed, you name it....i've basically grown up hearing these things bc of this stupid disease....and was believing it was all true. I almost failed out of college because of this....really thinking i was lazy...or i must've just been making up an excuse bc i really just couldn't handle college life. seriously....now i feel like the physical pain...is cake compared to this. I'm in no physical pain right now....my doctor is amazing....i'm so happy to have finally found him....but for the last few days...i've cried more over finding all this out...than i think i've ever cried about anything related to this since i was 14. i can handle pain...i'm a freaking pro at that now....
how on earth do i get past this so i can just enjoy how thankful i am to find out there is a name for what's been happening all this time?? i feel like i lost a huge part of growing up....i just turned 22 last month...and i feel at least 20 years older. Somehow....i've managed to have great relationships...i have a wonderful boyfriend who has picked me up and carried me to the car to bring me to the hospital while i've thrashed all over the place in pain like a maniac...and he's never once complained...i can tell it hasn't changed the way he sees me at all. I have 3 best friends that i've had my entire life...since i was 5....one of which is my roomate for the last 3 years...and has also rushed me to the ER the night before a final and had to use my hospital excuse to reschedule. all of those ppl have seen me that way...and i've even treated them really badly bc of the pain i was physically going through daily. I told myself so many times i was a bad person for putting them through that and that i needed to stop doing this to them...bc what if i was really making it all up......and i really wasn't? i just need help....i still have so much hope and confidence in my future...but i've been very very sad lately feeling sorry for myself...i guess bc i never have before about this....and it's like 8 years of answers for the one thing thats made me most miserable....all at once. i'm so afraid...

[leelee88]

Hello and :welcome: To the ICN!!

I can totally relate about being scared in the beginning, This is a very normal feeling.. But please know that we are all here for you and will help you get through this..I would suggest you read and learn about the many treatment options that are available and ask questions when you have concerns.. This site is what helped me get through that horrible time in the beginning..If you need anything please do not hesitate to ask.. Hugs!!!

[nottoc4]

I remember when I first was diagnosed,I thought my life was over.I mourned the food I couldn't eat,no more coffee, getting bladder instills that embarrased me to tell anyone but my husband. I have a good UroGyn and he has brought me to the place where I have little pain and few symptoms.It will get better for you...hang onto that guy,he's a gem! Jo

[readingmom]

Hang in there!!

Right now things seem overwhelming, but it will get better with time. At least now you know that it wasn't all in your head. That really makes me mad when they tell you that. Just knowing what the problem is is half the battle.

I have had IC for many years, and I thought my life was over. But guess what?? It wasn't. I am doing good, except for a few flare ups now and then. I don't take medication for it. I have to really watch what I eat and make sure I don't get stressed.

You will figure out what works for you in time. For now, just take one day at a time.

Peace to you....Christie

[Bekah79]

I hope you get some treatment that helps you.

Keep The Faith:pray:

[Snowden1]

I am sorry for what a terrible time you have had. Someone should have listened to you along the way. But, now you have hope to change your misery and to become pain free. Your life should get so much better now. I am so glad you have found a uro who has helped get you to feeling good. It is hard to think of what has happened to you in the past, but don't dwell on it. It sounds like you have wonderful people around to help and that is truly a blessing. You can now look forward to more fun times (rather than pain) and opportunities. You have endured a lot - that is a long time to be in pain so just think what you will accomplish now. Nothing can stop you now - you are on your way to a better life.
Teresa

[lashley]

oh my goodness...you guys are such a great support!!! i've never found anyone in these past years that could remotely relate with this...i'm feeling a lot better now. I had a breakdown...when the dr. told me all this...i just kind of went numb and for about 3 days i didn't even tell anyone what i'd found out. all the people who were by my side the whole time...i didn't even tell them. and it hit me...just out of nowhere...and i didn't want to sleep...i didn't want to do anything but be by myself and cry. and i did that...for about 12 hours straight and got it all out of my system. i went on the internet and found out everything i could...all the scary stuff and all the things that made me hopeful...speeches from dr.'s that have been trying to find a cure for this for 25 years...i just couldn't handle this whole world coming down on me. but i've been pain free since then...and i'm almost scared to get my hopes up now. this is too good to be true! but now i'm just kind of embracing this answer and enjoying this past week of no pain as much as possible. i'm not scared to go to the bathroom....or wake up....i just really hope this continues. i notice stress makes it 10 times worse...so i'm gonna be aware of that...chocolate and vitamin C trigger flare ups...and i always thought i was jumping to conclusions about that...but after finding this i realized almost all of you can relate to those symptoms. i want to thank you so much. i really don't feel alone in any of this anymore. i'll be praying for good health to everyone apart of this network...bless you!!!:angel:

[carole]

I think it is only normal that you would respond that way after finding out it was IC. You cried probably out of relief because the battle of trying to sort this out in your life was over. You also needed to mourn the fact that you have this disease and now have to deal with it. All of this would have been so overwhelming at that time. Your life journey of sorting this all out came to and end. It would have been a huge load off your back coupled with the diagnosis very emotional. Sounds like you picked yourself up off the floor. I can definetly identify with that. I've been in a puddle of tears a few times my self but am managing well now. It also sounds like you have alot of great people around you. That boyfriend of yours sounds like a jem.