Newly diagnosed and lots of questions!

[mara-beth]

I was diagnosed in April 2005. My only symptons at the time were mild discomfort when my bladder was full and then again upon release. I suffer from low back pain (MRI showed protruding disc, some degeneration and arthritis) and thought my pelvic pain was coming from that. I have mild to no burning, no frequency and a kind of period soreness even though I no longer get them. After reading about IC I feel fortunate that my case is more of an annoyance than anything else. I've read Solving the IC Puzzle and have been on an elimination diet for about a month and take 200 mg twice a day of Elmiron. So, my questions for now are...Is this progressive? How long (or short) before I know a food has caused a "flare up"? And where does the pain usually concentrate itself? I know there are no absolutes, every case is unique, but any input will be greatly appreciated. Thanks, Mara

[floridamom]

HI Mara
Welcome to the board! You mentioned you were diagnosed April 2005, how did you come by your diagnosis? I am just curious. I havent been officially diagnosed with IC, but do have a hydro-disten. scheduled for late July to confirm. I am pretty sure, as is my urolg. I have all the classic symptoms.
You are very lucky that it is just an annoyance. You asked about symptoms and where the pain is, so I can only give you my experience.
I began having frequent peeing after birth of my son (3 years ago), it got progressively worse (to the point where car rides over 15 min. required me to stop at side of road to pee!). I also had what my doc.'s thought were frequent UTI's. Horrible burning, pain in bladder area & pain in my upper thighs, however all my tests for UTI were negative! I finallly found the right urol. who brought up IC & it started to make sense!!
I am on Elavil25mgs a day at nite, that is the only med I take right now. However I am now in the midst of my first flare in over a month and am on codeine, it isnt helping:-(
I feel pain inside my vagina, plus horrible burning & the pain radiates down my legs & around my back, not to mention I am peeing up to 15 times an HOUR. I beleive the flare is due to myperiod due soon, eating choclate & spaghetti sauce.
I am intersted in finding out about your diet you are on, because I am well aware I need to change my eating habits to manage this IC!!
Feel free to IM me or email me, i am always willing to chat with people going thru the same thing as me.
Karen in Fl.

[emilyrose197377]

Hi Mara welcome to the Icn board you will find a lot of info about ic and support from other members. If you ever need any one to chat to or have any questions feel free to email me anytime.

Take Care
Kim

[ICNDonna]

I know how you are feeling. When I was first diagnosed and began learning about IC, it was pretty overwhelming. That was thirty years ago and I have now learned that my IC did not get any worse than at diagnosis. IC is not considered to be a progressive disease because only a very tiny percentage of IC patients do get worse.

The Patient Handbook at http://www.ic-network.com/handbook will give you lots of information. I encourage you to read it.

Donna

[mara-beth]

Thanks for the info and support. I answered Karen personally but for the record....I was diagnosed in May (not Apr) when my gyn thought my fibroids pushing on my bladder might be causing my symptoms (because they were so vague). She was talking possible hysterctomy but sent me to a uro first to rule everyhting else out. He did a cystoscope and then flushed me with potassium. That brought my symptoms on big time and the rest is history. He even told me if I looked on the internet not get scared. Of course I did and my biggest concern was that I was going to get worse and so started the diets but I'm not sure that they are making a difference for me. Like I said, I just don't want it to get worse. This website has been immensely helpful and I am open to anyone who wants to chat. Glad I found you, Mara

[patricia1]

Hi Donna is right. Only a tiny percent get worse. Usually by the time of diagnose you are at the point of where your bladder is going to stay. Everyones IC experience I am sure is very different. For me going so long without diagnoses has caused most meds and treatments not to work for me. But I am the abnormal not the normal. IC is a very hard and sometimes depressing disease to learn about. Usually once you start a treatment plan periods of remission without flares are easily obtained. Some go years without a flare up and then there are a few of us that have constent flares. Food/drink flares can start anywhere from a couple hours after ingesting to several days later. It just depends....I wish you luck