I've had IC all my life but just diagnosed 2 yrs ago, but don't know much

[beckestr]

I've delt with the problem of having to go pee every 10 min, had to push out pee due to fluid rentention, I've had this all my life and now I'm 20 and found out I had IC 2 yrs ago, after yrs and yrs, of going from different Overactive bladder meds, which did nothing but make it worse, the doctors all believed it was pychological, due to my age. I went though hell all 12 yrs of school, I've cryed on my knees telling a teacher in the 4th grade, I had to pee, but she didn't believe me, so I ran out after doing that. (well the last 2 yrs wasn't too bad, as I went to a different district than the earlier yrs)(the teachers, let me go when I needed to which helped out a lot!) but it still was hell for me, I love sports, but could never join school sports, due to worring about having to go to the BR. It wasn't till, I went to a decent Uroligist and years of different unsesseful treatments, that I finally got an answer to what this was. But by that time I found out, it was the last month of having insurance, so I never got to get treatment for it. I was on imiprimine for 3 yrs, but stopped it, due to, to high of dose, which made me a zombie.

What else other than tri depressants, help? I took a AZO for today, due to a flare up.

[vm]

Sorry you suffered for so long with no one to believe you and without answers. You have come to a wonderful place for support, encouragement and information.

This is a link to an older post made by the ICN's founder. It has a lot of good information about what you can do to help your IC:

http://www.ic-network.com/forum/showthread.php?t=24323

[ICLori]

I'm sorry you went through all of that. It must have been so awful! Many IC'ers do find that the tricyclic antidepressants help them with pain, but there are other medications/procedures to try. I know you will learn all about them as you navigate this site - there's a ton of great info here!

Welcome, and I hope you will be feeling better soon, now that you have a proper diagnosis! The worst time is always before that diagnosis, so I believe you have already seen the worst of this - now you will be on the road to getting better!

Blessings,
Lori

[traceann]

I'd like to add my as well!! You certainly have been through a lot, gosh!

I'm with Kim, I really think you should check out the Patient Handbook - it's an essential guide for help in dealing with IC!

I highly suggest starting the IC Diet as well, it's a great symptom management tool that's easily accessable to anyone. You still have to eat right? I know it helped me out greatly, and it's helped many ICers manage symptoms. In the Handbook is the IC Diet Food list, and it's been so much help to me! Here's a link to the page:

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

Once again - welcome to the gang!! We are glad you found us, like Kim said, it's a wealth of information & support. I had learned more here from this group of great people when I first came here than I did from my doctor!

[mary124]

i like to add my as well.
You sure have been though a lot for your age. I agree with the others, go to the handbook, try the diet. Its a lifesaver. Good luck.

[Bessie]

Just want to add another

[SharonA]

Here's another coming your way.

[Sarojini]

I was going to suggest the handbook, but Kim already did It really is a great resource. You will learn about the many, many different types of treatments for IC there.

[beckestr]

Thanks everyone!

I've looked at the diet, and gotta say, some will be quite hard, like with soda, I LOVE SODA! expecly sadly Dr. Pepper (has caffiene in it) I love hot dogs too, but I am glad shrimp is ok, thats one of my fav. foods. How should I do this diet? I know, caffiene does make me go a lot more often!

Sorry for the delay in responding from me, was a little busy earlier this week.

Is there any connection of constant stomach aches, and IC? All my life I've had that. for a good 4 years I slept next to a little garbage pale, due to stomach aches.

[mellusk]

There are a lot of people who have digestion and bowel problems along with IC, though the exact relation isn't known.
As far as the diet, it seems pretty overwhelming at first, but it's worth it. You may find that you don't have a lot of food triggers - for me, the big no no's are excess soy products, and any artificial coloring, preservatives, or sweeteners. You may not have to give up the things you love forever, also, even if they make you flare now. If you let your bladder heal, you may regain control over what bothers you. The thing is, you have to be dedicated to the diet at first and not cheat, which is hard, believe me. The food restrictions are for most of us the hardest thing to deal with at first, but it can be done...and the sooner you start and stick with it, then the sooner you'll be able to add things back in!

[L. Thomas]

I'm glad you found this site. You will find tons of help. There are as many, probably more, treatments as there are symptoms.

[soccermom32]

Hi!
You've really been through A LOT for being so young!!! I am a newbie here, so I can only advise you with what's been helping me with my IC. I have pain issues though, not frequency and urgency.
When you get your insurance (soon I hope!!!) You really need to seek out a great Uro-gynocologist or a gynocologist who specializes in pelvic pain and/or IC.
I take Elmiron - helps to restore the bladder lining. I also go into my doc's office twice a week for bladder instillation treatments which I LOVE. It puts a soothing solution right into your bladder...it feels great for me. I am on hydroxydine which is an antihistamine. I recently started taking Glucosomine with MSM b/c I've read good things about it, too.

I am on the diet, but HATE it and haven't noticed much difference in pain. I will tell you I don't have to pee much at all though so it must be doing something. I am going to see a nutrionalist next week who specializes in IC b/c I can't exist on this diet. I feel unhealthy and have no energy whatsoever. I am also really crabby.

Good luck! Browse this site - it has great info and the people here are SO helpful. You really need a good doctor though so you can get well.

[Portia17]

Cybalta, Neurontin, And Amptripillin (sp) All Helped Me Plus Percocet And Zanaflex. I Went To Pain Mgmt And They Got Me Through It


Good Luck

Mary