Interstitial Cystitis/Painful Bladder Syndrome

My sister has it and what has helped her is a drastic diet change with no fruit except blueberries. Every morning she takes a tablespoon of baking soda to neutralize the acids and that has helped a lot.

I have IC and it is not fun if you eat or drink the wrong things! Anything at all with any bit of acid in it will burn like the dickens! No cranberry juice, apple juice, orange juice, etc, actually the only fruit that is "safe" to eat is blueberries and for some people pears. I took medication for it and it did help some but I have to watch my diet a lot! I took Elmiron, Vesecare and if I had a bad flare up, piredion (not sure if that is the right name for that one but it basically numbs you when you pee so it doesn't feel like you're peeing acid). Since I am trying, unsuccessfully for the past 7 months, to become pregnant, I had to stop all medication. There is a medication that is somewhat similar to Vesecare you can take but you have to take it 4 times a day and for me it didn't make that big of a difference so I quit taking it. I strongly suggest she finds a urologist that deals with IC patients, my first urologist was very skeptical about it until he did the tests and saw for him self my bladder lining bright red but he wasn't well informed on how to treat it so I switched and have had a much better experience. My mom uses the nurse practitioner at her OB/GYN office since she deals with that and that is where she goes to get her bladder treatments. IC is a lifelong thing, it's not an infection or something that will clear up and go away. It can be managed and kept under control so she has little to no symptoms but she has to be very diligent about what she eats/drinks, even some medications trigger symptoms.

My mom has it and what's worked for her is a combo of two things:

1. Radical diet change. We're talking significant, crazy limited diet. She eats only bland things. No more fruits, only certain vegetables, nothing acidic like tomatoes, coffee, soda, garlic. Nothing vitamin fortified, like certain cereals. Vitamins are bad. She eats a lot of beans, plain meats (no sauces), potatoes, salads (with olive oil on top, no dressings). Have your friend look up the group for people with Interstitial Cystitis online. There's an association with dietary recommendations and other info. My mom has gradually limited her diet more and more as she recognizes her trigger foods. When she gets it right, she feels great.

2. Experimental electrical shock treatment. I can't remember how this is done, but she gets low volt treatment through her nurse at Kaiser. She's noticing a lot of improvement, despite being very skeptical it could help at all. My mom tried the med for IC but it didn't help.

Best of luck to your friend! I know it completely changed my mom's life, but she's well enough now they're taking a cruise in Europe this fall.

ETA: NO cranberry juice!!!! Ack. It's evil for those with IC.

I have IC. For a long time, I took a medication called Elmiron to control it. Gradually, I was able to pinpoint what seems to be the cause of the flare-ups for me.

For me, and some research backs this up as a possibility, the IC is an allergic response. Alcohol has nothing to do with it for me, although I don't really drink anyway. For me, after keeping a food diary and observing my symptoms carefully, I found that Lipton/restaurant brewed iced tea caused my flare-ups. It doesn't seem to be caffeine-related since sodas didn't cause issues. It doesn't seem to be generalized to all teas either since I am able to drink high quality green and black tea that I brew myself with no issue. Somehow, it's the way Lipton processes their tea or how the restaurants brew it that causes me problems.

When I cut this food out of my life completely, my flare-ups stopped. In fact, they stopped so completely that I haven't had to take the Elmiron in years.

I spoke to my allergist about this experience and she was intrigued. She said that they aren't sure what the true cause of IC is, but that allergies, specifically food allergies, are a suspect. She wants to do a full food allergy test on me to see what I react to and how that factors in to my observations with the IC flare-ups. I haven't gotten around to scheduling this yet.

My recommendation to your friend is this: If she's not already seeing a urologist, get a good urologist. She should also find an allergist who has some familiarity with IC and talk to him/her about the possibility of running a full allergy work-up. Not just the blood test. The full scratch-test work-up is much more accurate. She should also begin keeping a diary to see if she notices more symptoms at certain times or after certain meals.

If she can find a time where she has more symptoms than others, she can narrow that down and look at what may be happening (food-wise or activity-wise) to cause the symptoms. Then she can cut out whatever looks like it might be a cause for a while and see if that makes a difference. This is something that takes patience and experimentation, but I'm proof-positive that this approach can make a really big difference.

Best of luck to her! I hope she finds relief soon!

I am out right now but will answer detailed from home. I was ex in 1992 and have dealt with it for years. I had two kids post d x. It doesn't "clear up" but it can be treated and managed. More this evening or tomorrow in detail:)

Agree with no cranberry juice or pills..... Info from my son's pediatric urologist. Tons of water to dilute urine.

Hi BG,

What a good friend you are to ask.

Here's a link I found which was very thorough:

http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialc...

I don't know what will work for your friend, but I'll share what's worked for bladder pain and tonifying:

Cranberry juice....but only the unsweetened kind. Sugar feed any bacteria, and it sounds as though previous UTIs can be a possible factor in the development of IC/PBS.

Cut sugar, caffiene, carbonation and alcohol from the diet, period. Caffiene also can intensify pain, so another good reason to be avoided.

Talk to a naturopath or an allopath. They will likely be more thorough in helping your friend create a diet and find supplements that will work more effectively. Herbs can help considerably. I use Cranstat Extra (one of Dr. Tori Hudson's line) and it's helped.

There are medical remedies also in the link above. Worth having a look at.

I used to have this problem, but cured myself following a magazine article
I found in the UK. Alcohol yes or no was/t a factor.
This is the cure for every episode. After a while the problem just goes away or
so it did for me. Once every few years it might come back, but is easy to get
over.
1. put on the kettle, 2. take an asprin with something carbonated like coke.
3. drink a glass of water 4. now that the water is hot drink make tea or coffee and drink
as much as possible until you have to go to the bath room.

my grandmother suffers from this illness, she spent two weeks in severe pain because she didn't know how to take care of herself with this illness. she started taking Hyland's Bladder Irritation tablets which are natural and have no side effects, they are available on Amazon.com. She also takes New Chapter Wholemega Fish Oil 1000mg, that specific brand and dosage is a MUST, it's the best quality fish oil it's also available on Amazon and I recommend buying it from there since it's $10 cheaper than in store like Whole Foods. The last thing she's done is a STRICT diet change no acidic foods, no coffee, no spicy foods, no fruit except pears & blueberries and no alcohol. All of those things combined has brought big relief, she used to sleep with a bag of ice on her pelvic area because of the severity of the pain. She slipped up once with her diet and paid the price and hasn't slipped up since. Good luck to your friend, I hope she finds relief soon!