Interstitial Cystitis (IC) Support Group

Hi sorry to hear your diagnosis, but now you can start on a healing path. There are several treatments you can try. What are you doing now? I started on Elmiron after nothing else helped about 3 years ago and I am convinced it healed my bladder lining. I am 85% better now. I have had instills and now do them at home about 2 per month. I have recently stopped the Elmiron to see what happens and nothing for the past 6 weeks has changed. I also have PFD and physical therapy was the only treatment that helped. Now it is my PFD that sets off my frequency/urgency and sometimes the burning, but I have methods taught me by my PT that keep everything to a minimum. I actually have days I feel somewhat normal. I use the med Uretron which is purple and turns urine blue when things act up. I have also used in the past soda in water, Marshmallow Root tea, my tens unit on the abs with heat. Just heat on the lower abs helps too. Best of luck to you and keep trying whatever treatments available and get some good books on IC. It is a difficult disease to control since what works for one may not work for another.

I was only diagnosed 2 months ago, but i know if had it for 2 years. the minute my doctor diagnosed me they set up surgery for cystoscopy(mispelt) with hydro-distention. i had to take the antibiotic, im on my last 10 pyridium, and another muscly spasm med, and that's about it. Ive switched diets and been drinking about 20 times more water then i used to... its been rough and im only in the beginning.

You are on the right path by changing your diet and drinking water. Have you checked out the ICA website? It has lots of great material on there. Also if you want to talk to someone, they have people with IC manning the phones who will listen and give suggestions as needed. I talked to someone once when checking on my order for one of the cookbooks they sell. It was in the evening and the lady was supposed to get off at 5pm, but it was already after 6 here in central time zone and she is in the Eastern zone. She talked like she had nothing else to do and I am sure she had a family at home. It is a wonderful organization. It would be worth your while to check them out. Also check to see if a support group meets anywhere near you. I found one in Cartersville, GA that I attend whenever we go there. I actually live in AL, but we also have a place about 30 min from the meeting place. It is great to talk to others who actually understand our problems. At my first meeting there were about 7 of us and it sounded like we were talking about 7 different illnesses since our symtoms were all so varied. Keep trying any and all treatments until you find something that works for you. Instills seem to get the quickest results, but it may take a few different mixture of meds to get one that helps you. Some have had relief from the hydrodistensions for a few months or more, but I have not had one. I am one of the lucky ones to have the Elmiron work for me, but I still need to manage things on a daily basis most of the time.

Hi i really rely that your situation i was diagnose with severe ic a year ago,i live in a really small tonw north of sacramento ca and all my friends and relatives dont n know about ic so i dont have who to talk to and i know what you fell becouse myself im in pian everyday my dr give me ELMIRON but i dont know if its working becouse i have really bad flares and really hope that someday we are going to say that today we dint have any pain and we are going to have a normal day

Hope..just have hope..don't give up trying things, read better bladder book, go to icama.org Use your head and gut to try new things. Ive got lots of tricks., you are not going to heal over night, just as this condition has probably been inside us most our lives, getting bigger and bigger and bigger..healing it will take a lot of time and determination. Trial and error. Getting back on the horse, etc. There is no majic pill and that just means its individual problems we have to heal on our own. We are stronger. We can do it just remember to be willing to try anything and you will never give up.

Yeah ive been making a lot of life changes and been trying alot of different things. I dont feel like giving up but my body does! Oh yes it does. Mentally and Physically and emotionally drained. I guess id feel better if i lived in a place where they had some sort of local support group where i can talk with others face to face about my condition and theirs. but besides this site i really only have my family and i dont think they truly understand the magnitude and misery that i have to go through with just every day life.... also im a really low income patient and cant afford to buy any of the bladder books or cook books:( UHHHHH

I found taking a teaspoon of baking soda in a cup of water made the pain much less in an hour, sometimes I did it twice a day. Also taking Tylenol with codeine(you can get it without a prescription) really helped. Coming off of citrus(oranges, tomatoes, lemon) and eating less sugar really helped. Hope you get relief! Courage, my friend! isabelle1954

how did you get tylonel with codine with out a script?

In Ontario, Canada, you can get Tylenol(Acetaminophen Compound tablets with Codeine) either by asking the pharmacist or they have it on the shelf. It's also called Tylenol #1. It has a lower dose that the other Tylenols with Codeine which are #2 or #3 For me the Codeine really cuts the edge off the pain. Hope this helps. isabelle1954

Yeah we cant get codine here in america from the store you have to be prescribed it. I have been trying to do with out the pain meds as much as possible and trying all the home and natural remedies! its helping a little but but not as much as i would like! Im praying for everyone today with IC