I'm so sorry you have it back! Were here for you anytime! I have had the same problem, no treatments are working at this time and it's driving me crazy, I was just turned down from the Mayo, they dont have any available treatments for I.C.
They need to change these treatments to become more effective.
So glad you found this website.
take care!

Have you heard about IC Aloe Vera capsules? t's cheaper fromhealthy life harvest. Several of the girls have been helped and I plan to try it. isabelle 1954

No I havent heard of that they are called IC Alo Vera?

Welcome to group. I know how you feel. I'm praying mine stays in remission and or it's cured. Saying I'm cured is a positive thing for the universe to hear. How long were you pain free? Read a few of the other post there are things I've used that work and I'm sure the others have some good ideas and treatments that have helped them. Keep sharing. And feel free to holler at me anytime. Your not alone.

Healing hugs, Marci

I had it in the early 90's, and it went away from like 1992 until 2007. It just started again. I had incontience, and then bladder pain. I started on Elmiron but after 6 months it did nothing to help. I fact it was worst. I had a cysco, and said it wasnt red like before. I dont know what to do. I dont really want to do instills again, it hurt. Its horrible. people that dont jave it dont have any idea what its like. It controls your whole being. I would like to know what others have tried for it.

Yes, it's called IC Aloe Vera capsules. Many on this site have had relief after trying the Elmiron etc. You can get it at healthylifeharvest.com Prayers coming your way KLAG.
i isabelle1954

KLAJ-ur doctor may also let you do rescue instillations at home with elmiron pills. If you instill it through a catheter all the elmrion gets to the bladder. there are alot of people who use a mixture like elmiron pills sterile water, lidocane and sodium bicarbonate and instill it in the bladder. My insurance will only cover elmiron and I have to pay for sterile water out of pocket. that is the only mixture I can afford. I plan to start soon, when I visit my new doctor(hopefully) I have had healthy life harvest before. I took a large amount for 3 days (7 pills in the morning, 3 in the afternoon and 7 at night and I can tell u it works. Recently it didnt work for me. maybe cause im not doing the IC diet yet. and maybe I had luck last time.

I told 3 pills a day of the elmiron, and then I started to have blood in my stools, and it wasnt helping anyway. i took it for 6 months and no relief. In fact I felt worst. I dont think I can do instills myself. I really dont know what I am going to do really. My dr said the instills only work for 10% of people. They worked before 20 years ago, but I had to have surgery ect. So who knows what made it work. Its a horrible thing to go through. I never know how my day is going to be....

I am waiting to hear a decision on disability. Of course, I will be ready to use a lawyer. Oh, yeah! I do have IC, but degenerative disc disease is the main reason that I have not worked since the last of November. Yep! I have got some Desert Harvest Whole Leaf Aloe Vera. By the way, I stayed on Elmiron for years without side effects, but I never got much of anything out of it. Oh, well!

Elmiron did nothing but cause more problems. I got turned down for disability. They turn everyone down. Basically what they said is, you cant get it unless you are blind. Unreal. It took 9 months to decide that. Dont know whats next.

I'm new here to but my heart goes out to you. I know what you are going through.God bless If ya need anyone to talk to Im here for you

There are some on this web-site that have used Aloe Vera from Healthy Harvest.com(without citric acid)and one doctor was quite impressed with the improvement. Hope this helps.isabelle1954

Hi, I'm new here too, and I know how you feel. Did the DMSO, the installations, the hydrodilation in the hospital. Nothing worked. Have been reading up like crazy and and things are starting to turn around for me. It's been almost 3 weeks since my last installation. The Elmiron side effects are bad, and I wont touch it. went to health food store and bought chlorphyll drops(20 drops in water 1 x a day), ordered Ginger root extract without alcohol (Greenbush natural products) 10 drops, 3x a day, and Alkamax drops (10 drops-3x a day in water) to raise PH in urine(less acidity). and it is starting to calm down a little. I will find MY magic bullet to repair and reverse the pain. I will try aloe soon. I know rebuilding the mucosa in the bladder is important. Ginger root extract is anti-inflammatory and healing. Chlorophyll for antioxident/plant sterols, and reducing acidity to bladder..ALL keys to fixing the problem. Let me know how you are doing. You might want to try ice packs on bladder (no more than ten min at a time) and I have been sitting o cloth covered ice packs for ten minutes bfore bedtime..it seems to soothe..

I'm new here too and I know how it feels. It's so good to know that there are other people who understand how this controls one's whole life. I've been suffering with this since I was 14 years old! I swear, no matter what I do, I have random flare-ups.

For example, it's 1AM and I have to be at the airport at 5AM. I am wide awake, in pain, can't sleep, and am fearing to death getting on this plane in the morning. It's so depressing. No one can help.

It's really hard to stay positive in times like these. Any advice?

What have you tried in treatment? Sometimes I get into a panic attack, when I have to do something. I hate it, but I wont go through all the treatments again, that did nothing. The only thing I do is use a heating pad, I dont think it helps, it just feels good. I have up and downs. Somedays are unbearable, and others not to bad. Its something I will just have to live with. I had it in my late 20's for about 3 years, and then it went away until about 3 yrs ago. 20 plus years it was gone, then it came back. I hope you feel better. God Bless you.