Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

Comment from: Patti, 55-64 Female (Patient) Published: November 12

I so sorry to hear your despair. I was diagnosed with interstitial cystitis (IC) by biopsy three years ago. This diagnosis is a journey. I don't want to get into my whole history. Diet is important, but be careful not to overdo that too. I am gluten/dairy free and watch the usual IC diet. That has helped as well as stress management/meditation. The drug Hyophen has been my best help. The only side effect for me is dry mouth.

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Comment from: Moose, 55-64 Female (Patient) Published: October 13

I have had interstitial cystitis for over 10 years. It really irritates me when people tell me I should be able to eat things I know I can't. When I go to family picnics there is never anything I can eat. I usually have to eat before I go. My friends are more concerned about what I can eat than family. I have good and bad days. When I have a bad day I can't do too much. Sitting for long periods of time makes it flare up, and if I sit on hard chairs. I have found an herb that seems to help. It is aloe vera. It seems to help me. I also try to stay away from food that makes my IC flare up, which isn't easy to do. I drink lots of water every day and take ibuprofen when the flares get bad. It is good to know that there are people who understand what I am going through.

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Comment from: Lyn, 55-64 Female (Patient) Published: October 13

I was diagnosed with interstitial cystitis with ulcers in my twenties. I am now 57. I was told I had the worst bladder they had seen. They suggested I go and have a bladder made. I refused that. I spent years with pain in pelvic area with 65 times a day in bathroom. I have tried every treatment offered. Amitriptyline 100 mg has been the only thing that has helped. I have been in remission for 4 years until this week. I went to my family physician and he said I had a urinary tract infection. I am going to urologist this week. I hope it is not back.

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Comment from: Pain in Okla, 35-44 Female (Patient) Published: June 09

When I was first diagnosed with interstitial cystitis (IC) I was 22. It took seeing many doctors and several misdiagnoses before the correct diagnosis was made. My urologist started me on Elmiron which was not successful for me. The next step was bladder distentions, unfortunately those helped for a small window of time. My urologist relocated and I went without treatment for years. Two years ago at the age of 39 I was introduced to a urologist who specialized in IC. My first treatment with him was steroids injected into my bladder upon the discovery of Hunner's ulcers. The injections worked wonders, unfortunately it was only a short term fix, lasting only 9 months. A year passed and I could no longer function with the continual urgency and frequency. My urination was up to 30 times during the day and 5 to 6 night time trips do the bathroom. My urology specialist told me about InterStim therapy. After a lot of research on my part and many discussions we decided that having this disease for 17 years was long enough and it was time for a serious intervention. I had the one week trial of the Medtronic Implants to see if it would be a success for me. I kept a diary for a week, of my urination, including the urgency and frequency levels. During my trial experiment we tried and discussed the option of having not just 1, but 2 InterStim devices permanently placed to help my urgency and frequency caused by my IC. Upon my return for my follow up to report my experience, my doctor reported the trial was a success and we were ready for the permanent placement of the Medtronic InterStim therapy. It's been 10 months now since the surgery and it hasn't cured my urgency and frequency, but it has changed the severity tenfold. I do experience IC flares every now and then, but thanks to modern medications and a great urologist I know what to do to get through them.

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Comment from: Bitty71822, 45-54 Female (Patient) Published: March 11

I am 51 years old and have been diagnosed with interstitial cystitis for 20 years now. It is awful. It is so painful, yet the doctors do not want to prescribe pain medicine. I don't know how much longer I can live with this condition. I don't smoke, drink alcohol, or have sex yet I still have flare ups. When I do, it is the worst pain I've had in my life. No doctor seems to understand it. I feel helpless.

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Comment from: Michael, 55-64 Male (Patient) Published: November 23

I was diagnosed with interstitial cystitis six years ago. I've seen 12 to 15 doctors with no relief.

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