Patient Comments: Interstitial Cystitis - Symptoms and Signs

What were the symptoms and signs of your interstitial cystitis?

Comment from: Shelley, 35-44 Female (Patient) Published: July 19

Hi I have been under a Urologist in Brisbane for over two years now for chronic cystitis. I have moved away to the country 12 hours away. My Dr put me on Endep for Cronic cystitis. After some playing around with dosages I have been pain free apart from the occasional day. I have been taking 1- 50mg tablet at night. I however find that in this time I have put on 14kgs. No amount of exercise or lack of food helps. I am a small eater, always been active and a size 10 -60kgs. I now find I'm struggling to fit into size 12/14s and weigh 74kgs and my feet swell up. I went on line to see what the side effects for endep are and found that excessive weight gain that can't be controlled is one, also fluid, another symptom. Endep does work well for me. I have tried decreasing it and even going off it altogether as advised by my Doctor, but found that the symptoms came straight back. I need to go on something else but don't know what. Something that won't make me put weight on. I have been going to the gym for the past 1 1/2 years.

Was this comment helpful?Yes
Comment from: Lorraine, 45-54 Female (Patient) Published: January 21

I am a 52-year-old female and have been diagnosed with IC for just over a year. I have urinary frequency and pain when my bladder is empty. When the condition is at its worst, I cannot drink any acidic drinks and have been advised to give up caffeine. I have had cystoscopies twice in the past two years and both times areas of "chronic inflammation" were seen and subsequently burnt off. On the first occasion, my consultant urologist thought that I had bladder cancer but pathology reports were just chronic inflammation. She then thought it was an ulcer but pathology said just it was just chronic inflammation. Both times my symptoms improved after these areas were removed, but gradually they returned. I am now having bladder instillation every month, but the symptoms are gradually returning. I try to drink a lot of water and am currently not drinking tea or coffee, as this seems to make the frequency worse. Sex is not painful, and I do not have severe pain on urination; the pain is mainly when I drink acidic drinks and my bladder is empty.

Was this comment helpful?Yes
Comment from: chalker58, 55-64 Female (Patient) Published: April 01

I have the symptoms of interstitial cystitis, the pain and frequent need to urinate. I"ve done some research and found that taking corn silk capsules or tea really helps. I purchased the capsules and will see how it goes.

Was this comment helpful?Yes
Comment from: Santafe, 55-64 Female (Patient) Published: August 08

I was diagnosed with bladder infections from the time I was 20 and went through many painful procedures, including barbaric urethra dilations. Finally, when I was about 48, I went to another urologist who mentioned IC. He suggested I stop eating citrus, aged meats and cheeses, and drinks with caffeine or alcohol. He also prescribed Elmiron. For the first time in 28 years I didn't have pain. Since retiring I have stopped Elmiron, but I stay away from citrus and caffeine. I am so thankful for that urologist who told me about IC.

Was this comment helpful?Yes
Comment from: Sadie, 35-44 Female (Patient) Published: August 08

I am a 42 year old female. I am currently in the process of being diagnosed with IC. For the last six years I have been torn between having bladder, urinary tract infections, yeast infections, and or bacterial infections. Many times I have been to the doctor with a burning sensation in my vaginal area. I have been tested several times for any sexually transmitted diseases, and always came back with negative results. Finally, I started researching my symptoms and came up with IC. I have had the scope performed and nothing was found several years ago. I drink a lot of decaf tea with lemon. I tried cutting down on the lemon, and I have seen some improvement. I have started to notice that I have to use the restroom and urinate more and more frequently. Hope to find some relief soon.

Was this comment helpful?Yes
Comment from: Janrose, 45-54 Female (Patient) Published: July 09

I suffered from IC for about 1 year. I tried to limit the foods on the list provided by my Dr. But it didn't help much. I didn't realize that it was mainly the diet cola that was the cause of my IC problem, I am 99% better since I quit diet cola..I used to consume about 2 cans per day.

Was this comment helpful?Yes
Comment from: Elmiron, 65-74 Female (Caregiver) Published: February 06

My mother suffered with interstitial cystitis. It was horrible. She was in such pain all the time. She ended up hardly being able to walk because of the pain. The doctor gave her pain medications and Elmiron. Nothing helped. When I would help her to the doctor for her appointments they would just look at her like it was all in her head. It is a terrible disease!

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Interstitial Cystitis - Describe Your Experience Question: Please describe your experience with interstitial cystitis.
Interstitial Cystitis - Treatment Question: What treatment was effective for your interstitial cystitis?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.