Interstitial Cystitis

[danikali]

Hi everyone,

well first of all, I want to say that I wasn't diagnosed with IC, but irritable bladder. My doctor gave me some medicine, gave me a few tests to check for cancer and then just told me I had irritable bladder, had to live with it, there are no specific foods to help it, and she gave me some perscriptions. Well, this was a year ago, one of the perscriptions (I don't remember the name) I couldn't find anywhere! None of the pharmacies by me had this drug, so eventually, I gave up because my pains went away. She also gave me Urocit-K which I used for a couple of days and it was supposed to be for the burning in my urine, although that wasn't my worst symptom, so I stopped taking it because it wasn't really doing anything. Anyway, everytime I type in 'irritable bladder' on the internet, I get IC along with it. Irritable bladder is described as someone who just has to 'go' a lot. That's all. Then IC has all of my other symptoms. (Bad back pains, horrible abdominal cramping, sometimes blood that comes out of me, groin pain, severly swollen lower abdomen, and sometimes shooting pains in my upper legs along with the cramps, sometimes a burning feeling when I urinate, and also a shooting pain or burning pain in my urethra out of nowhere.) Everytime I have gone to the doctor for this problem, they either tell me it's a UTI bladder infection WITHOUT testing me, give me an antibiotic and send me on my way. (the antibiotic NEVER works)....or they test me for a UTI and NOTHING comes up. It's ALWAYS says that I have NO infection.

So anyway, with all of that said, I believe I have IC. I've never been tested for it, but I'm wondering if I should now. I know certain foods bother me, so I usually stay away. Most of the time, any caffine bothers me, and very rarely I try, and sometimes it doesn't bother me. But then it eventually catches up to me, and here I am again, hating myself for having that cup of coffee. From now on, I know I can't even have a cup anymore.

So, I guess out of all of this, my quetions are, do you think I should get tested for it? I mean, will a doctor even be able to help this (I have VERY little faith in doctors these days-although sometimes I get scared when the pain is bad and I wonder if I should be seeing one). For those of you that have IC, does this also happen to you? And if so, what do YOU do for it. What foods do you stay away from? Do you take medicine? How long does it take to clear up for you? Can you do anything to speed up the 'flare' and make it end? What do you do if you have severe edema? (Mine is horrible!)

Please help me.

Danielle

[danikali]

Just wanted to bring my post to the first page again........just in case someone who has IC see's it later in the day.

[ILOVEOMC]

Hi Danielle,

I have IC and was diagnosed 15 years ago. TO diagnose IC the urologist must look into the bladder and see the tell tale signs in the bladder wall for a diagnosis. AT least that is how they diagnosed me. I tried several different treatments and finally am only taking one pill a night (hydroxyzine) and that helps pretty much. Foods are a real big part of what irritates the IC bladder. Caffein is a big one like chocolate and coffee. I don't drink coffee but I love chocolate and it hurts if I eat too much at once or over several days. To help myself when the pain is bad, I drink lots of water at once and just flush the system out. A hot relaxing bath helps too. I understand your pain and encourage you to get a check for IC and begin treatment. It helps!!!

[danikali]

Hi Danielle,

I have IC and was diagnosed 15 years ago. TO diagnose IC the urologist must look into the bladder and see the tell tale signs in the bladder wall for a diagnosis. AT least that is how they diagnosed me. I tried several different treatments and finally am only taking one pill a night (hydroxyzine) and that helps pretty much. Foods are a real big part of what irritates the IC bladder. Caffein is a big one like chocolate and coffee. I don't drink coffee but I love chocolate and it hurts if I eat too much at once or over several days. To help myself when the pain is bad, I drink lots of water at once and just flush the system out. A hot relaxing bath helps too. I understand your pain and encourage you to get a check for IC and begin treatment. It helps!!!

Thanks for replying. Do you get the same symptoms that I mentioned? And I'm even scared of water right now because I am so bloated, my stomach is so swollen, when I drink water, I get bigger and my insides feel tighter and for some reason when I go to the bathroom, it doesn't feel like it all comes out so I just put that much more water into my system only to create more bloating and pain! How long did it take for your 'flare ups' to go away? This is so bad. I haven't been normal since Sunday.

[ILOVEOMC]

Yes, sometimes the bladder doesn't empty all the way. Sounds like you really need to see a urologist and have them look in the bladder. Remember, I can get control over my bladder but I am also on medicine for it. If you aren't on medication for it, it probably wont' get better if it is truly IC. Yes, your symptoms sound real similar to mine and I think any urologist would recognize your symptoms and take action. Your bladder is probably having spasms with the pain and isn't able to relax and function properly due to the pain. That's why it isn't emptying right, I think. I never had blood that I saw though. Please go and make an appointment and let me know what happens. I hope it gets better. Oh, they say taking a spoonful of baking soda and then drinking water after that might help ease the burning. Let me know how it goes, I care!

[jesscarmel]

Hi Danielle

this past year, i kept thinking i had bladder infections but they always came back negative so i went to a urologist because they thought i had ic. i had a cystocopy and they stretched the walls of the bladder ( i forget what that is called) anyways since hten ive been better. befofre my symptoms were burningw hen peeing and peeing alot. i sitll go through phases where it acts ups but so far its better than before.

jess

[whitball]

I have was diagnosed with IC in 2003. I had a scope to look into my bladder. My bladder holds 700cc's of urine. The average bladder holds 1000. No hemorrages (sp?) were found but because of the fact that foods like tomatoes, lemonade, soda, etc caused lots of pain for me, my urologist diagnosed me with IC. There are people without hemorrages with IC. I take elavil at bedtime to control the pain. You should ask for a referral to see a urologist and request a scope. Good luck! Tara

[loraleena]

I was diagnosed with IC in 2004. I found almost immediate relief by cutting certain foods they recommended out of my diet. Especially oranges and tomatoes and alcohol.

[danikali]

Wow thanks everyone.

Well, I went to the hospital yesterday because the pains in my back were SOOOOOOOOOO BAD I thought my intestines were going to erupt! So they checked me out, I told them about my bladder problems too and they checked for an infection, which of course, I didn't have. Then they explained that the pains I was talking about were where my colon is and they kept asking me, are you sure you didn't get gluten somewhere? are you sure? I said yes, I know that I didn't! Well, I got home with no answers but then started to really think about my symptoms. THe more I thought about it, the pains I was having, the back throbbing, hurting to the touch, shooting pains in legs, bad D for a day and now C, were actually symptoms of being glutened. I just haven't been glutened since right before the holidays in December! So I thought about everything I ate/drank and then decided to call this phone number of a new tea that I had. In the ingredients it didn't list gluten, but I thought why not call? So I called and they confirmed, yes, there is maltodextrin in the tea from gluten! It wasn't listed on there anywhere!

Anyway, after all this, I have been glutened and didn't even recognize it. But I have also now learned that my bladder problems also get worse when I get glutened.

Right now, I am just in pain.....living on rice cakes and applesauce and hoping this all goes away very soon.