You were diagnosed with just a potassium blood test? For me it took surgery to diagnose my IC. My Dr. did a procedure where he put me to sleep and put a camera into my bladder to look for internal bruising and to look at the lining of my bladder. I don't see how you could get diagnosed with IC without that test. I'm new to IC too, and trying to figure out what triggers the pain is almost worse than the pain itself. All of the materal tells you to stay away from acidic food, but there are alot of foods that are acidic that you wouldn't think they are. And a lot of dietary supplements like vitamins. I'm still working through trying to figure out what makes my pain worse, but I'm in the same boat you are in, constant pain, except my dr. doesn't prescribe pain meds. Needless to say I'm getting a new Dr. soon, as my Dr. is only in the office on Thursdays and never has time to see me.
I found that an exclusion diet is the only way to really figure out what bothers you. Keep a journal as to how you are feeling through out the day, and also write what you've eaten that day and at what times. Then after a couple weeks you'll be able to see a pattern of when you're pain is worse, and what food you ate at that time. Good luck to you.

Thanks for the advice!

The potassium sensitivity test was in the bladder itself and I know this type of test can be inconclusive. I mean, what woman wouldn't feel a burning sensation after having a potassium solution squirted into their bladder? It was a blind test, so I didn't know which solution had the potassium in it, but still...

After talking with my GP today, we both are a little leery about wether or not I even have IC. At first we both thought, "FINALLY! AN ANSWER!" but it doesn't seem to be the case. I'm still going to track my food and drink but it seems impossible to determine if that is what is causing me pain. (?) The only thing that I can think of that will cause more pain is alcohol and that is always the next day.

I'm also starting PT which I've read can help with pelvic pain tremendously so I'm keeping my fingers crossed. I'm also trying to find a pelvic pain/endometriosis specialist, I just don't trust these doctors anymore.

Thanks!

Hi! Welcome to our group! I was in pain for about a year before I met a great urologist who suggested that I have a hydroextension of the bladder. I'm unsure of the exact name but I was put to sleep and my bladder was filled with fluids and tested to determine if I had IC. And after that, he determined that yes, I have IC. After that, I had to change my diet and have noticed that this has helped greatly. I avoid foods with marinara sauce (like pizza) or acidy types of foods or drinks, like alcohol, coffee, and orange juice. Every person is different.. I agree with Katepants.. keeping a journal is the key to determine what kind of foods you can handle, and what kind of foods or drinks can cause your bladder to flare. Also, a couple of nice ladies on this site told me about Prelief. It's an over the counter pill that you can buy at Walgreens that you can take with every meal. It helps to reduce the "acid" in the foods and drinks. I've heard that this works for a lot of people and after using it for a week, I've noticed that it's been working for me too. I guess IC pain could be defined as having symptoms of a bladder infection quite often without actually having one. Do you have similar symptoms to these? I sometimes have a burning sensation and other times, I have severe pain in the bladder/pelvic area. Good luck with PT, I hope that it works for you! If you need any further advice regarding diet or treatments, please let us know and we will be glad to help you! Please keep us posted. :)

Laura

wow, I am so sorry that they did a K-sensitivity test. That's how I was diagnosed to. It is so incredibly painful. I almost kicked by uro in the face.. But now I'm digressing...

Foods: yes, foods can affect your pain level and cause flares. You want to avoid foods that are metabolized to acidic compounds and foods with citric acid. There is a really long list of foods that may induce flares, but you'll have to determine which ones do and which ones don't for you.

I recommend you look at the IC network website for detailed information about how the irritation occurs and how to figure out which foods you have to avoid.

http://www.ic-network.com/diet/#foods

Here is a diet cheat sheet from them too:
http://www.ic-network.com/diet/2009icdietlist.pdf

I was diagnosed with a scope in my bladder so I'm not so sure you have IC but I know the desperation there is that makes you want to find an answer. Unfortunately I had a gut full of adhesions removed before we got to the IC diagnosis. I was so hopeful the pain would go away. I also have so much pain from other diseases. But for me, I can distinguish the IC because it is very low in the pelvis and feels like super bad cramps. I've had a hysterectomy though so if you still have a uterus that won't be helpful. As far as diet goes, citrus is a definite trigger as well as soda pop. But after cutting all the trigger foods from my diet, 2 years later I am just as bad with worse flairs. Just getting the diagnosis wasn't as helpful as I had hoped since I have no treatment options now. Just good old fashioned suffering. I would insist on a cystoscopy to make sure it's IC. Also, do you have a lot of blood in your urine? I mean lab wise not visual. My doc had to take biopsies just to make sure it wasn't cancer.

I would go to a urologist and ask for a cystoscopy and bladder distention for a definite diagnosis. In the meantime, as the ladies said you just have to do the elimination diet. Take everything out on the "no-no" list then add one thing in at a time to see if it bothers you. Good luck!

I was diagnosed a couple of years ago. Anyway we had this public speaker on Jan. 18 who was talking about switching to soy or almond milk if you have skin or digestive problems. Anyway to make a long story short, I tried it (keep in mind I'm in pain everyday) and I've been pain free since I switched milk. I thought dairy was IC friendly? I would like someone else to try it and see if they have the same results, if at all possible. Good luck and keep this in mind, I feel great, like I've got my life back!

My doctor "diagnosed" me with the potassium sensitivity test and gave me a glossy brochure too. After a month or so, I went back with some new pains and she backtracked on her diagnosis, said she wasn't positive and I should go to a urologist for a cystoscopy. I was thoroughly disappointed! I thought I was on the right track to treating or at least managing my pain! I have not been to the urologist yet. I am still waiting for my consultation appointment.