I began my experience with interstitial cystitis with awful and extreme pain in my lower pelvic area. The pain became so bad that I could not do any simple household chores or complete sentences. I was first sent to my urologist where a cystoscopy was performed. Then I was put on medications including, Hydroxyzine, Elmiron, Levsin SL and Flexeril. This slightly relieved my pain but not enough to make me feel I was still among the living. I then was sent to a pain specialist where they went over my test results and spoke to many of my doctors. I have had Crohn's disease, chronic fatigue, osteoarthritis and thyroid disease for many years. I was told that this interstitial cystitis was part of an auto-immune disease grouping that many people get. It’s as if your body is attacking itself, thinking good cells and tissue are bad and trying to destroy them. But of course, there are no bad cells or tissues, and my good tissues are being destroyed in this process. I would greatly urge anyone with this to be seen by as many doctors as possible for the ultimate in medication coverage. Then one must see a pain specialist to be given the most amount of pain relief medication possible without making a zombie out of you. With these things being done you will not be cured, but you will be able to “live” a better, more enjoyable life. Published: September 15 ::

I am 25 years old. I was diagnosed with interstitial cystitis two years ago. I have always had endometiosis, cysts, and tumors. I feel as if I’m always in pain. It was impossible to have sex with my husband because the pain was so bad. I had a hysterectomy because my gynecologist thought it was female-related, and after I had that done, I was still in pain all the time. So my doctor sent me to a urologist, and he tested me and told me I had IC. I take Elmiron 100 mg, three times a day and percocet as needed. I use vaginal valium before sex. My pain level is an “8” most all the time, and I get up about 10 times in the night to use the bathroom and about that many in the day. If I don't go to the bathroom as soon as I feel the urge, I will wet myself. When I do go to the bathroom, it is very painful! Published: February 06 ::

I may have found a relationship between ZICAM Allergy Relief (inserted into the very first part of each nostril) and the pain of IC. I had a very bad flare up about 2 months ago, and I wondered if it had anything to do with taking a lot of allergy meds including this ZICAM. I have been free of pain for about 2 weeks, and today had an allergy attack, so took this ZICAM. All of a sudden, pain of IC again. I also took an inhalation of Advair because my chest seemed somewhat congested. Advair is just marvelous, but could it also be a cause of painful IC? It has helped the congestion, but has it also caused IC pain? Published: February 05 ::

I have been living with ic for almost 2 years now. I do know my mother always complained of pelvic pain and urgency, but I guess I never really understood her. We both have it now, but we take different approaches to it. She decided she lived with it long enough and does not take medication -she lives with it-. I take Elmiron -have been taken it it for almost 1 yr. I experienced some relief, but as you know relapses when it likes to. Matter of fact I am up right now at 5:00 in the morning. No one else really understands what you go through and how exhausting the next day is with little sleep. The Urge is horrible, but thankfully no pain. I will try acupuncture since it brought some patients relieve, I am willing to try homeopathic meds if available. Published: February 05 ::

I am a 23 year old university student who has dealt with IC for over 4 years. I was desperate to try anything to help since I was usually up at night anywhere from 10-24 times (ended up with severe insomnia as a result) and often had to make up to 42 trips to the bathroom during the day. I had to drop out of university and could hardly work. I tried everything from distentions, oral medications, instillations, and even some experimental medications. I was on a strict diet and using acupuncture to alleviate the pain (which surprisingly helped). After 2 years of no relief in sight, I had the sacral nerve stimulator implanted (which wasn't easy or pleasant, but worth it) and have since been enjoying a more normal life since! I still have had to watch my diet and avoid things like alcohol, but life is much more enjoyable. Published: November 19 ::

I was diagnosed with it three years ago. I was getting urinary tract infections every so often, but the last one I had didn't respond to antibiotics. My family doctor sent me to a specialist and after running all of the tests I was diagnosed with ic. three years before that I went through chemo and radiation for breast cancer and I thought my nightmares were over, but the ic has given me more pain and problems than the cancer. I was taking Elmiron, and feeling better, but then I quit taking it and my pain and urgency to go to the bathroom returned. I started taking my Elmiron again, but so far it's been 2 months and it hasn't helped. I pray that there will be a cure for this awful condition soon. My heart goes out to everyone with this problem, and you will be in my prayers. This might be helpful: I remember that I ate pineapple the night before I got my last flare up of ic. Published: September 26 ::