Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

Comment from: Monica, 25-34 Female (Patient) Published: March 25

I was diagnosed with interstitial cystitis (IC) when I was about 17 or 18. I am now 24 going on 25. I took tramadol and had the procedure done by a urologist where they stretched my bladder, along with a strict diet. All those things helped but my doctor said the underlying cause was endometriosis. Once that was under control, my IC symptoms would improve. After going to several gynecologists and being misdiagnosed for years, I found out I never had endometriosis, but pelvic congestion syndrome. I had surgery about 3 and a half years ago for that and have been much better since. Initially, my IC symptoms went away for the last couple of years until now. A couple months ago, I found out I was pre-diabetic (but I have the symptoms of a full blown diabetic) and my blood sugar levels hadn't really been under control. With diet, I think for the most part my blood sugar is under control but it may not be. My primary doctor refuses to put me on medicine for my blood sugar since I'm technically not a full blown type 2 diabetic. I think that this is the culprit of the flare up possibly. I will be talking to my primary care physician and scheduling an appointment soon to meet with my urologist.

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Comment from: Taylor, 19-24 Female (Patient) Published: February 25

I went to the doctor and she told me that I may have interstitial cystitis (IC). She doesn't know because she couldn't run a culture. I've been dealing with issues for 2 years now. I will get symptoms that are close to a yeast infection and then sometimes I will feel like I'm getting a urinary tract infection (UTI). I also have frequent pelvic pain and also a lot of lower back pain. I was having discharge but the doctor told me that my cervix was very red and inflamed and that there were a lot of white blood cells and discharge. I was given pills for that and I was also given some UTI medication and fluconazole until I can get to a urologist. I'm very frustrated and I can't seem to get an answer from anyone.

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Comment from: Carole, 45-54 Female (Patient) Published: February 19

After my second child I was having issues and I kept on getting the wrong diagnosis. Interstitial cystitis is a very serious disease. You are in so much pain and never sleeping. Not good for my mental health either. After several different procedures, they put me on Elmiron. It is a miracle drop for me. I took it daily for 3 years, I do have it on hand still for flare ups. I also have AZO Standard on hand too in case I do not have any Elmiron on hand.

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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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