Living with Interstitial Cystitis

August 2007

• IC in men - by Pete - (Wed, Aug 29 2007)
  I have had it for 8 years now…been on Elmiron for 5. I underwent the DMSO instillations for something like 2 years till it didn’t work anymore. Beware of DMSO, it messes with your eyes in the long term. After those treatments didn’t work anymore, I tried BCG (bovine tb), and hydro-cysto distention, (quite possibly the worst pain a man can take) [more..]
• IC/Joke of the South - by Terry - (Wed, Aug 29 2007)
  I was in a major carwreck in June 2003. My gas pedal got stuck on my car. I was heading towards the gas pumps at the wal-mart center, a guy told my son later that he saw me leaning down. I don’t remember, I think I blacked out, for I do not remember anything about that day. I hit a manhole cover that sent the car into 3 full rolls, throwing me 60 feet out of the car. I ended up landed on the grass ditch face down in the mud, it was raining hard. An emt was there and he cleaned as much dirt out of my nose and mouth as he could and got me back breathing. I was taken by ambulance to a hospital 60 miles away, admitted to the icu unit, had broken 3 vertebraes in my neck, had a hangman’s fracture, broke 5 ribs, both pelvic bones, had a hematoma of the skull, had a eight lb. weight on the floor connected to my head to keep me from trying to move my head, I was in a come 21 days, in the hospital 49 days, came home wearing a 6 lb halo screwed into my head for 60 days, and I bad as all this pain. I was later diagnosed with Interstitial Cystitis a chronic disease of the bladder and this was like no other pain I ever knew, it’s as if one has an open wound and someone is pouring salt on it, and bladder spasms that shoot pain up my back, Pain that will bring one to their knees, Go to ichelp.com to read and learn about this joke in the south. It took months and many urologists to finally get the right diagnosis. There are bladder treatments, for example, Elmiron, a pill taken by mouth to help restore the lining of the bladder, but it caused me to have severe heartburn and stomach problems. Then I started being catheterized and having treatments instilled into my bladder at 1 treatment per week for 8 weeks. It took a while before I actually started feeling better. And having a nurse who cannot catherize you without causing more pain can make the pain worse. And believe you, when my husband’s insurance would no longer pay for that urologist to treat me, then I’d go to another urologist. I went to about 6 in all and the last two had nurses who hurt me worse than helped me and one who asked me to hold my catheter up while she ran and tested my urine sample. The last doctor I had did not know about IC and when I tried to give him info on it, he laughed and said I don’t need that. His nurse asked me why I was having the catherization. I thought Oh God No! She does even know what IC is and has never treated it. That really scared me. And she hurt me every time. I only went back 4 times for I did not need more pain. Now the insurance will not pay anymore, thus I cannot afford the treatments I need, and now I am back in really severe pain and have even considered suicide. There has been no sex because penetration hurts too much so my marriage is in a lot of stress. I have a wonderful husband but he is tired of me being sick all the time and complaining with pain. I don’t know where to turn or what to do! I think the public needs to be educated about this very chronic disease, it needs to be talked about more on TV shows and we need to educate the public about it, for very few of us truly talk about it. It has been compared to the worst pain a person can have and I have been living with it since 9/2003 and the pain gets worse without treatments. I am also a diabetic and have had a hernia cut out of my eusophagus [esophagus], cut and stitched. I also believe a certain doctor who burned cancerous cells off of my cervix right after the wreck may have caused the IC, because I was doing good after the wreck but don’t believe my immune system was strong enough to take the chemical treatment she did in her office. My gynecologist now asked why didn’t she just do a hysterectomy on me since I was in my 50’s and could no longer have children. Then he said “Oh, I know why, because she did it in her office and made more money from it!!” Thanks for your time and I hope others will read this and be educated about Interstitial Cysistis! [more..]
• urethra irritation - by Irene - (Wed, Aug 22 2007)
  Hi, I had stop taking hormone for 8 years, after I had my ovaries removed. fear of getting heart attack Now I started to have irritation in my urethra. It’s the most horrible feeling, it’s like getting bladder infection everyday and night. I used to be able to eat any spicy food, since I stop my hormone my urethra constantly inflamed when I ate any acidic food. [more..]
• ic horror - by dr - (Thu, Aug 16 2007)
  i have been told by by doctor he thinks i have ic-the mother of all pain as far as i am concerned. I am so afraid i have bladder cancer i feel very much alone-although my entire family is behind me. [more..]
• Botox Injections For My IC/freedom! - by wgd - (Thu, Aug 16 2007)
  I had never heard of this before, however my urologist had several articles posted in the newspaper where he had helped patients with IC by injecting Botox into the Bladder. It is very costly but some insurances do cover it. Thank goodness mine did. It was done in day surgery [more..]
• I.C. for 4 years - by MW - (Wed, Aug 08 2007)
  I was diagnosed with I.C. 4 years ago. I too went to my primary/gyn doctors numerous times and given antibiotics & Detrol for non-existant U.T.I. My gyn called it inovulant bleeding/hormone imbalances, etc. Finally, my primary sent me to an Urologist After 5 minutes she told me that she knew I had I.C. she needed to do hydrodisention w/cystscopy to verify her diagnosis. [more..]
• Works for me… - by Molly - (Mon, Aug 06 2007)
  Early last year (2006), when I was referred to a Urologist his first guess was I might have IC. He recommended that while I wait for more tests to be done, I should try and eliminate a number of foods from my diet: spices, citrus, alcohol, caffeine, drink alot of water…within 24 hours I started to feel better…then I went on a diet of fresh, unprocessed foods ( I survived on cantalopes for about a week and felt great!!!). [more..]
• Help I’m Desperate… - by NIkki - (Fri, Aug 03 2007)
  Ok, so Ive had these same symptoms since I was about 15 years old..urgency and frequency, lower back pain, lower abdominal pain, constant pressure, severe and uncomfortable pain during and after intercourse, a pinching feeling on my bladder, and i was diagnosed at 20 years old after a laproscopy [laparoscopy] and hyperdistention when they fill your bladder [more..]