Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

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: loco, 55-64 Female (Patient) Published: March 05

I have had interstitial cystitis (IC) for half my life now, ever since a bladder infection diagnosed at age 31 (I'm 63 now). I think I've tried almost every treatment and nothing has helped. Sometimes my teeth are on edge so much from the pain I want to scream, even while I am in front of a class. (I'm a teacher, so screaming would be bad!) Lately, I am taking more and more Pyridium, up to 3 pills a day, and hot baths, and I have started taking Paxil again which I used to take as a headache deterrent but now I am hoping will help take the edge off and make me more psychologically stable. I have also started doing daily meditation. I once saw a physical therapist who taught me internal massage on the pressure points using a dilator; I'm thinking of trying that again.

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Comment from: Tamsy, 75 or over Female (Patient) Published: December 23

I have been taking Elmiron for interstitial cystitis (IC) for over 15 years and it has helped tremendously. Of course I have occasional flare-ups at which time I take Pyridium. It is thought that the IC is an autoimmune problem as I also have endometriosis, colitis and chronic sinus congestion. My main problem now is that the Elmiron causes high liver enzymes so my gastroenterologist wants me to stop the Elmiron. I don't see how I can do without it. Elmiron has a half-life of 20 to 25 hours which is not much, of course. If I stop it for several days, then my liver enzymes are normal. There should be a happy medium here.

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Comment from: Tonya, 35-44 Female (Patient) Published: December 16

I am 36 years old and was diagnosed with interstitial cystitis (IC) in June of 2007. I had symptoms for years but was able to ignore them until about February of 2007 when I could barely work. My symptoms then are the same as they are today: fatigue, pain in pelvic area and low back, sometimes in my hips and down my legs, and tenderness when pressing on my bladder. I went to a primary care physician (PCP), had a urinalysis and he said it looked like I had 'a chronic urinary infection not acute' so he put me on an antibiotic. That didn't help so he gave me a longer regimen of the same antibiotic. That didn't help so he gave me a stronger antibiotic. No relief. He wanted to rule out kidney stone, appendicitis, etc. But I didn't have insurance at the time. The pain was so bad one day that I went to the emergency room (ER) and had several tests to rule out a kidney stone, any bacterial infections or STDs, appendicitis, and everything was negative. I had a history of endometriosis so I thought maybe it's that. I was of course at my wits' end and getting very depressed. I saw my gynecologist and he thought it was endometriosis as well, so he did a diagnostic laparotomy. All negative. After the surgery when I saw him in his office he gave me an IC questionnaire. He decided that's what I had. He put me on Elavil and Elmiron and did 2 bladder instillations in a week. The following week my house sold, I paid off a lot of debt, moved and took a great job, i.e., got rid a lot of stress! I didn't have any symptoms for about a year until I had several deaths in my family and a lot of stress again. I tried eliminating things from my diet but couldn't tell a difference. I've had numerous hydrodistentions and they eliminate the symptoms for a few months depending on my stress level. I'm almost certain that my flare ups are directly related to my stress level. I really hope my post helps someone. It is not easy to deal with.

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