I really need some help please

[toucan]

Hello,
I have been trying to search for people to talk to or a group to join. I am so confussed and an emotional reck. I have so many questions and feel like no one else in this world has ic disease. Could someone please help me.

[Roxie2007]

HI! You can write me here or PM me......what questions do you have? I know what it's like to be an emotional wreck.......so feel free to write.....Roxie

[toucan]

HI! You can write me here or PM me......what questions do you have? I know what it's like to be an emotional wreck.......so feel free to write.....Roxie

how do i pm I am not very good with a computer

[toucan]

hello thanks for answering me. I have ic disease I had a hyster 3 years ago and they destroyed my bladder. I just found out 6 months ago that I have ic disease. I went threw 11 urologist and now on my 12th and he wants to do another surgery. I also have pain in my right kidney all the time. My stomach blows up when i have an infection which i get every 5 weeks i swell so much i look like i am 9 months pregenate and have to wear maturnity clothes. Are some of these sympotms normal? I was told that i am very sick and i am scared and dont know what to do. now they want me to have pelic therapy and my head is swimming.

[**Angie**]

Your not alone. There are sooo many of us out here. If you go to the main page at the bottom there is a listing for support groups by state maybe there is one near you. What is it that you want to know? I'm sure someone will have an answer or an idea that might help you. Take deep breaths ~ think calming thoughts ~ things will get better.

[Roxie2007]

HI Toucan, To PM go to the top of this page......on the right hand side you will see the words "private messages" in blue.......click on that and it'll take you to the private message section.......Roxie

[GriffsMommy]

You can also click on a persons name and a menu will appear. One of the options will say send a private message and that will take you to a new page to send a PM to that person.

[lasrlsrps]

I take one day at a time, right now I have no insurance and can't get my meds. because of this, so I have to deal with my symtoms more or less. I do hope you doctor's can get to the bottoms of this and help you get better, please feel free to write me anytime. I don't have all the answers, but I can sure try to help you in anyway I can. My e-mail address is [email protected]. Don't hesitate to write me anytime.

Lori

[dg2901]

Toucan---unfortunately all of us here completely understand what you're going through, and we're all willing to help any way we can. Take time to read through the boards; dont hesitate to post your questions and concerns--theres always someone logged on who will respond to you.

Hope you start feeling better soon!

Diana

[ICNDonna]

I'm so glad you found the IC Network. One important suggestion I have is to read the information in the Patient Handbook at http://www.ic-network.com/handbook --- the handbook will answer many of your questions.

And sometimes it's best to post questions, rather than asking individuals. When you post a question, many people will read it and you're more apt to have the question answered.

Sending warm healing thoughts,
Donna

[stacyY]

HI, well if you will like someone to talk with ill be glad to my name is stacy, I have been diagnosed with ic in feb 2006, Been threw a lot.. learned a lot.. Be glad to give you any advice and help you need. you can e-maile me at [email protected] just say your from the ic net work, and then i will know who u are..
take care,
stacy

[redmowii]

We are here for you

Please keep your head up. Maybe you should try to find a uro that specializes in IC, or at least was taught about it in school. Because IC is such a newly recognized disease, some of the older uro docs don't really recognize it. At least that is the feeling I get here from the posts. Try to find a uro who deals with it frequently.
It sounds like your IC is totally out of control. Do check out the ICN Handbook like ICN Donna recommended. I have read it many times, and keep reading it over and over. Each time I read it, I get something new from it to try.
The diet is the thing that helps me the very most. I work very closely with my uro when I'm having problems. Good luck, and all of my hopes and prayers are with you. I really hope you get feeling better soon. Post here with questions, concerns, or just to vent any time. This site is so active that you usually have an answer fairly quickly.

[born2swim]

I'm sure you can find a local support group (assuming you live in or near a large city). There is a link on the main page for support groups and I found one in my new city. I hope to talk with them next week. That way, I can also find the best doctors (from other IC patients) in my town.

Sorry to hear you are struggling so much!