Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

Comment from: Patricia, 65-74 Female (Patient) Published: May 15

I was diagnosed in 2013 with interstitial cystitis (IC). I had been having urinary tract infection (UTI) symptoms since 2006. Primary physician would prescribe a course of Cipro and things would settle for a while but a few weeks later, I would have bladder pain, low back pain and frequency. I saw 3 different urologists before I found one who did a cystoscopy under anesthesia and stretched the bladder lining. After the surgery, he told me that I had interstitial cystitis. I had a Foley catheter for a few days and was bleeding for some time. After the bleeding stopped, I had a series of DMSO (dimethyl sulfoxide) bladder instillations and was started on Bactrim DS 1 daily. Things went well for about 3 years and then I had a real UTI and had Cipro for that. I had moved in the meantime and no longer had the same urologist and had to find a new one. She took me off the Bactrim DS and started me on methenamine hippurate 1 Gm daily orally. As the cause of IC is not known and there is no cure, I just keep up with the oral medication I am now taking. I had a total hysterectomy in 1983 and 20 years later, I had a cystocele repair as part of the bladder had broken through the vaginal wall. I was nursing at the time and had lifted something too heavy. I just today started having the symptoms of a UTI. Last one was in late 2016. So went 3 years without symptoms. I hope I do not need to have the cystoscopy again with the DMSO bladder instillations but if the symptoms continue regularly, I will need to do something.

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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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Interstitial Cystitis - Symptoms and Signs Question: What were the symptoms and signs of your interstitial cystitis?
Interstitial Cystitis - Treatment Question: What treatment was effective for your interstitial cystitis?

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