Recently Diagnosed

[Amber48]

I have never posted on a forum like this and I am a little uncomfortable putting myself out there but I also would like to meet people who are in my position so I thought this would be the best way to do that. I was diagnosed with IC a couple of months ago, but have had symptoms for over a year. The symptoms first started after I had a persistent UTI that just wouldn't go away with a variety of antibiotics. My urologist recommended that I read the book "You Don't Have to Live with Cystitis" without really telling me that he thought that's what I had. After reading the book I realized that I did have IC and I could relate to so many things in the book. I went back to my urologist and told him that my symptoms matched what was being described in the book and he diagnosed me with IC. My urologist has been really supportive and he always encourages me to do research on my own and let him know what treatment I think would work the best for me. It has been nice having a doctor that is willing to listen to my concerns but it has also been frustrating that there aren't any treatments or medications that work for everybody. My main symptoms have been pain and discomfort. I haven't had any major issues with frequency or urgency (yet) which I am thankful for. The pain can be completely unbearable at times. The main treatments I use for pain is Pyridine and baking soda water. I have also eliminated a lot of food/drinks from my diet to try to combat the pain. Sometimes I feel like I should try other treatment options but I don't really know where to begin. I have been reading about alternative therapies and have a basic understanding of the prescriptions available but it seems like there are so many options out there. Is there a recommendation that you have for where to begin with treatment options? I have felt isolated since being diagnosed with IC because I haven't met anyone else who has any idea what I am going through. My boyfriend and family have been supportive but being able to talk to people who have experienced the things I am going through would be really wonderful. I have spent the past few hours reading a lot of the posts on this site and this seems like a wonderful group of people and I am so glad that I found you all. I look forward to learning more from each of you and I want to thank you for taking the time to read this! :)

[Briza]

Hi and welcome :hi:
You have come to the right place for advice and support. Please take a look at the patient handbook, accessed thru the ICN home page and also the IC diet and diet cheatsheet. Near the top of this page you will see where it says DIET in blue...click on that. Diet is top priority for the majority of us...even if we do have meds. Finding your food triggers and avoiding them can often keep the pain from even starting. Also drinking lots of water is very important, as concentrated urine is very irritating to the bladder. You are correct...there are MANY treatment options and it may take some trial and error to find the med or combo of meds that works best for you.

Some common start meds for IC include:
Elmiron
Low dose Elavil
Atarax
Lyrica
rescue instillations
Urelle or Prosed DS...similar to the Pyridium you take, but safer for long term use)
An antidepressant if your diagnosis and symptoms are seriously affecting you emotionally

Like I said, these are meds that are the usual starting points, but there are many others. Your urologist should be familiar with at LEAST the ones I listed. I am glad you have a dr who welcomes your input, that is always good. However, if he does not seem to be knowledgeable about these commonly prescribed IC meds, then it wouldn't hurt to get a second opinion.

Another very good and comprehensive book regarding treatments is the IC Survival Guide...it is probably the best one on IC out there. You can order from here from the ICN shop, or from any reputable online bookstore. A library MIGHT have it.

Self help: cold packs and/or heating pad where ever you're hurting. Lots of us have a heating pad attached to us almost like a permanent fixture. For me, I get more relief from cold therapy.

Don't be shy, don't worry, we were all new at one time to this board...but everyone here is very nice and very helpful and this board is very active and rarely does a question or a request for support go unanswered.:)

Best wishes, let us know how things progress...Bri:)
and best of luck in finding the treatments that work for you...the majority of us do!

[glitteringglory]

Welcome to IC network!! I was diagnosed in July 2008 with IC. I am still figuring things out. I hope you find this site as useful as I do! And it is good to know that you are not alone! :hi:

[BT2008]

Dear Amber,

I am sorry we have to meet under these circumstances, but you have definitely come to the right place.

And--you have been doing the right thing! Research, research, research! Scour these threads and other internet sites; there are all kinds of suggestions, success stories, and even quite a few threads that share the many bad days that sufferers experience as well. These latter threads have really been good for me; not because they are "bummers", and fail to provide hope--but because I can read where other people are suffering the same horrible symptoms that I am.

The good, success stories are more than wonderful; each one gives me hope that I too will one day be a "success story"!!!

Take care, and know that you are not alone! We are all here for you...

~Beth

[songbirdiam]

Hi and Welcome --

I was diagnosed in August, 2008 and I too am still trying to get the hang of things. I'm sorry you have IC, but you will find this website full of helpful information and caring people.

Hope you start feeling better very soon.:hi:

[ICNDonna]

First of all I'd like to say :welcome: to the IC Network family. I know you'll find a lot of helpful information here.

I also recommend Dr. Robert Moldwin's book, "The Interstitial Cystitis Survival Guide." It's an excellent source of information for anyone with IC. And the Patient Handbook on this site is also a good place to learn about treatment options.

It may take a while to find which treatment options work best for you and which foods and drinks are problems for you, but most of us do get there --- and most of us feel good most of the time.

Sending well wishes from your neighbor to the south in Oregon,
Donna

[Amber48]

I wanted to thank each of you for your encouragement and advice. I really appreciate all of your kind words and I will definitely take your advice and read the patient handbook and the IC Survival Guide. Thank you also for the list of prescription medications. I had done a little research on Elmiron but hadn't heard a lot about the others. Now I will have more options to explore and talk to my doctor about. It is so wonderful being able to talk with people who understand what I am going through.

Also, I noticed that a lot of you have your diagnosis, current treatment, etc. on the bottom of your posts. How would I go about adding that information to mine?

Thank you all so much!

[rainbowlady]

Hi I have never done this before either still learning how, I don't know how to do the forum thing that good yet, your not alone hang in there the info on this site has helped me I find the diet is very helpful for calming some of my symptoms before i was eating all the wrong things.hope to hear from you soon