Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

Comment from: jodi, 19-24 Female (Patient) Published: November 19

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.

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Comment from: HP, 25-34 Female (Patient) Published: September 26

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.

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Comment from: Msstarrgirl, 45-54 Female (Patient) Published: August 06

I have a lot of discomfort with my interstitial cystitis. I'm up one to two times every night to empty my bladder. The pain level is an 8, with 10 being the worst. My doctor told me that most people don't have the pain all the time like I do. I take Elmiron (100 mg) twice a day, and Ultracet for pain as needed.

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Comment from: Hope for all, Male (Caregiver) Published: March 20

For all of you who have interstitial cystitis. My girlfriend has it and more. I have been reading and the anti-inflammatory diet is a good start for all with this problem.

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Comment from: c, 45-54 Female (Patient) Published: January 27

After I had the bladder sling/mesh surgery in 2012 for interstitial cystitis, I have had numerous urinary tract infections right after the surgery, then almost through the year in 2013 and now in 2014 I was referred to a specialists.

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Comment from: Lady, Female (Patient) Published: August 20

Before being diagnosed with IC I had had many UTIs. After several very painful bouts where antibiotics did not help, I was seen by an ER doctor who prescribed hydrocodone 7.5 and Valium. This was a godsend. I will take the wooziness over the pain any day. My episodes last about a week, but only occur every two to three months.

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Comment from: Beavcan, 55-64 Female (Patient) Published: May 21

I was admitted to the hospital Labor Day weekend in 2002, with what was thought to be a kidney stone. This was never confirmed, but my PCP wanted to find out more, so she sent me to a urogynecologist. He talked to me about what he thought it was, and I kept thinking, “oh, it's not that bad." It was. I "failed" Urodynamics, and had no idea inserting a catheter was that painful. The cystoscopy a few weeks later confirmed interstitial cystitis. I had no idea what this "IC" was. I had never even heard about it. That was December 2002. It is now May 2013, and I have been on disability for IC since April 2007. I now have cystos roughly every nine months, with some relief. Fortunately, I lived in the U.S. when it was diagnosed. Unfortunately or not, I now live in Canada. There are lots of medications available in the U.S. that are not available in Canada. Pyridium, for one, and Elmiron are not readily available here. I am lucky in that I have a really good urologist – one of the best in the area on IC. I was very lucky in the beginning to have a PCP who would not take not knowing for an answer. My urogynecologist in Connecticut made the best urogynecologist list in Connecticut; he was great, I miss him.

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