I take freeze dried aloe from desert harvest. I get it from them as they remove the part that can cause it to be a laxative so it is safe to use long term. I also take cystoprotek which is a glucosamine condroitin supplement. There are other supplements like Bladder Q that work well. I think it's best to get supplements that are specifically made for IC as they tend to leave out other bladder irritants that are often found in supplements. That's why I get my glucosamine and condroitin supplement through algonot and not say GNC.

IC pelvic pain can be very very severe. When my pain was really bad I could barely stand up straight and was on pain meds so your severe pain could be from IC. Finding out your trigger foods is also very important. Seems like you're going in the right direction. Best of luck.

I have not tried natural medicine but followed the IC diet religiously for a long time with only limited foods (oatmeal, chicken, watermelon, eggs, blueberries) in my diet for a couple months, then slowly added from there. Now I can mostly control IC symptoms through my diet. I have more of a mild to moderate case, and having an occasional beer or one coffee a day (with that being the only real acidic item I take in) does not cause me too much grief. I still do get flare ups from time to time, but it is not nearly what it was before following the diet.

ginny30, thanks, the freeze dried aloe is on my list of things to try. I'm going to research the cystoprotek as well. The supplements my herbalist has me trying are not herbal blends and i'm going to add them slowly just to be sure they aren't irritating. Hydrangea is one and Burdock is next on the list to take, followed by Black Walnut. and i'm on some strong probiotics as well.

i seem to have found my niche as far as diet (haven't had a flare in 5 days... that's huge, i was in pain 24/7 for weeks before i started the diet) but man does it get boring. I really, REALLY miss coffee and i look forward to being able to at least drink low acid coffee. I'm picking up some carob this weekend so i can at least have a chocolate fix

I do extremely well with the natural route. I have taken the desert harvest aloe and the cystoprotek. I have also tried quercetin. I take prelief if I want something acidic such as green tea or wine. I do ok with 1 or 2 beers but no more than that. I stopped taking the aloe and other supplements because it was getting so expensive. I do really well without the supplements. I do take Femdophilus probiotics periodically and I think they're awesome! The diet is pretty restrictive and it does get old sometimes. But the flares are so painful I find that it's worth it to follow the diet. I would say that I cam get away with 1-2 of my favoritie acid things a few days of the week and do very well. Baking soda eases my bladder pain almost instantly :) By the way, I just made it through a hysterectomy with no bladder flares and I didn't take any supplements except prelief as needed and femdophilus.

I tried the aloe from desert harvest for a month with no change. How long did it take for the Cystoprotek to work and were there any stomach upsets as I have problems with IBD. Get relief from baking soda but it takes about an hour and I was on the IC diet with good results but now am OK without it. Isabelle1954

I think you can put cystoprotek in the fridge just prior to taking it in order to limit the GI side effects. Some people take some the ingredients in custoprotek separately instead. I would think the dessert harvest aloe should have made a difference for you by now. I noticed a difference and it alleviated flares if I took extra.

I have bad GERD and if I take more than 4 cystoprotek a day it flares bad. I also freeze them. Start slow and work up. It can take months for cystoprotek to work so give it a good 6 months.

As for the aloe some people need higher dosages. If the 3 in the morning and 3 at night do not work they say to up it and try that dosage for a month. If it's still not working after that it might not work for you.

Why does it take 6 months for stuff to work? Is it that long it takes for the bladder wall to heal? Thanks. Lynneat

Hi! My name is Madison and I really want to share some information with you about my struggle and successes with having Interstitial Cystitis. About 6 years ago I began to have horrible pain that grew worse and worse until finally I wasnt able to move without feeling like I was going to collapse from the pain. I was totally bedridden for days at a time, and even in the bed I would barely move because every new position caused sharp pains. I was going from doctor to doctor multiple times per week, all of whom were unable to discover exactly what was causing me such debilitating pain. They all just kept saying it was a UTI that I must be having a hard time getting rid of...then a few days later they would call saying the tests came back negative for a UTI (like I had told them it would from the beginning). After a few months of this nonsense, I began insisting for my doctors to try something else; refer me to specialist and do any tests they thought MIGHT possibly give us some information. It wasnt until about 2.5 years ago when I went to yet another new doctors office, that a Nurse Practitioner saw me, carefully listened to my symptoms, and referred to me a Urologist who specializes in Interstitial Cystitis; I was diagnosed a few weeks later and began the long road to recovery. I am eternally grateful for that Nurse Practitioner and I aspire to help people just like she helped me, as I just got accepted to nursing school :). As most of you know, it is extremely frustrating and difficult trying to figure out what you can/cannot eat, use on your body (if you have severe IC, like me), and use in your home. I definitely cried myself to sleep on multiple occasions because I was so fed up with the entire thing and it really sucks having to cope with the fact that this will be with you FOREVER. I tried multiple medications that my doctors gave me and discovered that it really didnt make a difference, or if it did it only lasted a few weeks/months and then I would start having constant flares again. So, about a year ago I starting going a more natural route, and I found it to be much more helpful. I started taking Activated Quercetin, Colostrum, Grapefruit Seed, Serrapeptase, and Triple Flex every night before bed at that time (and now). www.ic-network.com has really great information, food, chatting forums, food charts and lists, and most of these supplements available to buy. This website saved my life when I first started researching everything there is to know about IC. But Ive got to say that the three major contributors that got my flares down from basically every day to literally once a month are these: (besides the obvious food restrictions)
Gluten free - Ive been gluten free for about 7 months now and it really helped with the pressure. It took me about 3 weeks to really notice the difference but now whenever I accidentally take a bite with something with gluten I feel the pressure the next day and my wrists start to hurt again (I had huge ganglion cysts on eat wrist too...thankfully they went completely away when I went gluten free)
Vemma- Its a natural drink that has anti-inflammatory properties that I take a shot of twice a day and it made the most difference with how often my flares occurred. I started taking it only about a month ago and I swear I felt the difference within 3 days. It was the BEST feeling in the world. Im thinking I might try to stop taking some of the pills I normally take every night because I feel like this product is all I need (fingers crossed). Unfortunately, it isnt really sold in stores so you have to buy it through someone you know or a representative...If you dont know anyone who sells it, here is my boyfriends website http://drgreene.vemma.com . He became a rep. after seeing how awesome it made me feel; I wanted to wait a few months before spreading the word just to make sure it really helped but Im just too excited about it and it has made such a huge difference already!! Its definitely worth it to just take a look.
No Purified Water- I know this one seems kind of crazy but I used to only drink purified water from on of those machines you put in your fridge but one day we went camping and bought 3 big Arrowhead containers and I began to feel much better while drinking the spring water. This mostly contributes to how often my flares are. I notice almost instantly when I accidently drink purified water. I get more thirsty even though I am already drinking water and later that day I get a mild-major flare.