Living with Interstitial Cystitis

Hi,
I got diagnosed today with Interstitial Cystitis I had been having symptoms similar to urinary tract infections (burning during urination, frequent urination, constant feeling to urinate). I had been on antibiotics numerous times but the symptoms persisted. The urine cultures which had a presence of blood in it came back negative. My family doctor sent me to the urologist whom I had seen two years prior for recurring urinary tract infections. He had performed a cystoscopy and could not find anything wrong. I then presented with these present symptoms.

I had a hysterectomy in 2006 and the problems started shortly after that surgery. I didn’t connect or realise that the hysterectomy would change the position of the bladder. The ultrasound did not show any problems. I couldn’t shake the fact that I might be dealing with bladder cancer I’m a breast cancer survivor and when things go wrong you automatically think that it’s cancer. I try to stay positive and optimistic so before drawing any conclusions, I waited for the results. I had another cystoscopy done today under anesthesia with bladder distention. This procedure helps to rule out cancer. The doctor goes into the urethra with a cystoscope and and stretches the bladder with liquid or gas and looks at the walls of the bladder.

From what I gather, there is no real cause to this syndrome. Some people think that diet has a direct relation to it (caffeine, aspartame, acidic foods chocolate just to mention a few…). The bladder wall contains the urine. The walls of my bladder had many little perforations that would cause the urine to seep out through this perforation and cause inflammation. I found that when I drank lots of clear fluids, I could flush out the symptoms and feel ok after a few hours. However, if I did not drink lots of water, I would have burning and the symptoms would persist. I’m happy to know what I’m dealing with now and plan to change some dietary habits. If the symptoms continue to persist, I can take a medication called *Elmiron (approved in 1996 by the FDA). I would need to take 100mg 3 times per day for about 6 months.

I have a follow up visit this September and will let him know what I have decided based on the changes I will have done to my diet. Well that’s it…I hope I’ve been able to help at least one other person with this post.