At this point, I would like to share with you that 3 months before my diagnosis my family experienced devastating tragedy. I won’t go into details, but it was profound and life changing. I was physically and emotionally exhausted. I was completely depleted and had nothing left my tank as they say. So that was my status going into surgery and radiation. The fatigue hit me in my third week. Now I remember the fatigue from 25 years earlier, but I did not remember the intensity of that fatigue! It was a struggle to make it through each day. To work, to treatment and then home, where I would collapse on the couch, get up to eat and then go to bed. That was my life for at 6 weeks. My skin burned, cracked and oozed much more this time than it had 25 years ago. But the worst thing was that during my fourth week I developed a UTI (urinary tract infection), which I could not seem to shake. After 3 rounds of antibiotics, my urine culture was clear and they pronounced me cured. Only one problem. I was still experiencing all the same symptoms. The pain was constant. I thought I was going crazy and if one more medical professional told me to just drink a lot of water, I was going to throttle someone. I was already floating from all the water I was drinking! I was then referred to an Urologist for further testing.
You see, I had an Aunt on my Mother’s side that had died of bladder cancer, so you know right where my mind went. It also got my doctors attention . Anyway after several tests , nothing was found and I was given a clean bill of health. Wonderful, right? Except why am I still in pain? For the next 5 months I continued to experience all the symptoms of a UTI. One day I was talking to a good friend of mine and describing what I was going through and she looked at me and said “I know exactly what you have because I had the same thing happen to me last year.” She then explained to me that it was a condition named Interstitial Cystitis. I went home and immediately went online to investigate. ICS is an irritation of the lining of the bladder. It mimics a bladder infection but it has to be treated completely differently. While a high acidic diet can help inhibit the bacteria in the urine for a UTI, it is the worst diet for ICS. You must stick to a very bland diet, no caffeine, alcohol, preservatives, artificial sweeteners, citrus fruits and juices, spices ect. Yes, this is what I have! It was such a relief to put a name on what I was experiencing. I went to my gyn, armed with all my information, told him that I believe I have ICS, and he agreed! He gave me lots of information and directed me to the official website for ICS. Thank you Dr Greenberg for listening to me!