newly discovered that I was diagnosed 2 years ago

[innej]

So here's my story. My pain started in Jan. 2001. I’ve since seen 4 urologists. One has performed a cystocopy and found nothing out of the ordinary, but did diagnose me with IC and prescribed Elmiron and trimepothrim (at the time I had no idea what that was, only understood it meant I had minor unexplainable pain, and left it at that--too busy at the time to give it much thought). I have since stopped taking both mainly due to recurrent yeast infections. Another doctor, who did not think that I have IC, performed an uninstrumented Uroflow but found nothing too alarming and prescribed Ditropan XL. I took that for two years with mediocre results, but stopped in July of this year due to a possibile connection with my chronic hives (happened twice so far, both times lasted 2-3 months). I am now in Germany, and after suspecting I had another UTI, I began seeing another doctor here in Berlin. He gave me a vaccination (antiobiotics) against UTIs and some pain medication. I've since experienced the worst pain ever whilst not having a UTI, and decided to really go through my own medical records and take matters into my own hands. Only this week did I realize in fact the 2nd urologist diagnosed me with IC; I had stopped seeing him in favor of a younger female urologist who I thought would be more sympathetic to my pain and get to the bottom of it. . that was probably a mistake. Bottom line is I don't know what to do next. My German doctor has not addressed whether I have IC or not. I'm currently living on a Fulbright Scholarship--that means I have very little money to spend on even the cheapest drugs. I've recently read Dr. Moldwin's Survival Guide Book, and decided I need to take SOME kind of action soon. Only what?

[Dixiefireball]

Hon i'm so sorry you are having a hard time right now, but glad you found us :welcome: to the ICN family that is what we are here we try to support each other and love each other.
something you may try to help your systoms is the IC diet you can find the diet at www.ic-network.com/handbook you also will find there many other treatments that is used to treat I.C
I wish I had answers for you
sending you much love and prayers from South Carolina
Rhonda

[SharonA]

:welcome:

I would suggest you take a look at the IC Handbook. It can be found at:www.ic-network.com/handbook (http://) . There is a lot of information available there, including the IC Diet. Do check that out. There are many of us here who have found it very helpful to find out what foods might be triggers and cause us to have the bladder pain associated with IC.

I am glad you found us and hope we can be helpful. :)

[Katrina]

:welcome: to the ICN!
I have some links where there will be some basic advise to living with IC that isn't really medication. If you don't have insurence I recommend you take one of the alternative treatments for sale in the ICN store http://www.icnshop.com/

:grouphug: keep in touch!!
http://www.ic-network.com/forum/showthread.php?p=90935#post90935 Newbie kit from the oldies to the newbies

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.
The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

[ICNDonna]

One of the least expensive things you can do is to put yourself on an IC diet. That step alone may help significantly.

Sending gentle hugs,
Donna

[Sarojini]

Oh, I'm so sorry... what a difficult position to be in!!! Donna is right though; the least expensive thing to do is put yourself on an IC Diet (found in the patient handbook at http://www.ic-network.com/handbook). Just eliminating certain foods from your diet can have a big effect on how you feel. Also, this handbook contains lots of self help tips that can help and aren't too expensive... like taking warm baths, drinking water with a little baking soda in it, and other little things you can do to help relieve pain.

I do hope you can see a doctor soon who can help you. And, congrats on the Fullbright Scholarship!!!! :D What an achievement!!!!!!!!

[traceann]

Since everyone else has given great advice, I just want to say welcome, also! I put myself on the diet about a month ago now (hard to believe it's been that long already!), and I am convinced that is what has helped me the most, immediately at least. I do also take elmiron, ditropan and vistaril (hydroxyzine - an antihistimine). But I believe the diet has brought me the most immediate relief.

I have always gotten hives from this or that (some very scary mouth-swelling episodes too!), very annoying really, so I asked my doctor about taking the hydroxyzine, since I guess histamines are part of the problem attacking the bladder, it was cheap (20 bucks for 3 month supply) and we both figured it couldn't hurt, and at the very least my allergies would be better and the sedative/antianxiety property of it helps me to sleep and be a bit more realxed in general. And since I seem to be an allergy-type person, I thought it might benefit my bladder. But it's just a thought on something to talk to your doc about, as things work differently for different people, but I have read on the site here that some women just seem to use this, and it helps them immensely. I have only been takig it since the first of December. But, again, this is just my take on things, lol. ;)

As for pain, I have gotten all my remedies from this site, lol. Heating pad, cold packs etc., whatever works with the least amount of meds for me. I will take 800 mg of over the counter Motrin when I need to, but I try to manage without anything but home-remedies. I do use the Prelief too, when I am eating out or a suspicious food, and it seems to work pretty well for me.

Well, that's about all I have, as I am new to all this too, but you can see that in just a month of being around here, I have come up with lots of stuff to help myself, so keep flopping about and check out all the links that the ladies gave you...there is a wealth of info to be had, even on the cheap!!!

Take very good care of yourself, and be good to yourself!

Hugs and Warm Fuzzies,
Tracey :), also still very new and navigating the IC waters....