My name is Kristie Jones, I am from Georgia, and I was diagnosed with IC roughly about two years ago. I believe that I have had this disorder for some time, however was never properly diagnosed. The symptoms of a bladder infection began to occur on a monthly basis when I was 15, and the doctor would prescribe antibiotics, that would subside the problems for awhile, but eventually return. A little over two years ago I began having serious complications with my bladder, so I went to see my family physician, and was said to have a very bad UTI. However I had severe bloating, severe lower pelvic pain, and the only way to tell when I had to urinate (which was every 10 to 15 minutes) was by a severe intense pain in my lower abdomen. Finally after two rounds of antibiotics, and no better off, I was referred to a Urologist. Several tests were ran and there was blood in my urine that was constant, so my doctor requested that he do bladder distention to see if there was evidence of IC. After two procedures, he diagnosed me with IC.
As any normal person would do, I just didn’t want to accept the idea of having an illness that was not curable, and had to take medication off and on for the rest of my life. I made an appointment with a local Urologist, and asked for a second opinion. He, too did bladder distention, and diagnosed me with IC. He placed me on several medications, and said that there would be good days, and there would be bad. That was a year ago.
Since then, I have been taking Elmiron, Detrol, and Peridium almost every other day. I recently went to my urologists, because the pain never fully goes away and I still urinate almost every 30 minutes. He told me that I would be taking Elmiron for the rest of my life; that my case was rather severe. I will tell you that in the past year my symptoms have worsened by about double what they were, and sometimes it’s unbearable. As you all know, sometimes you can be fine, and then there is that all too common pressure and pain down low, it will take your breath.
After reading so many others stories, and researching all that I could find, I realized that everyone has so many different outlooks on this, and I wish I could say the same. I hope that one day there is maybe some cure to this, however I have begun taking it one day at a time. I wish that everyday I could stay positive, but then the idea of living with an incurable disease is always there, haunting me. Hopefully I can tell someone someday that my symptoms have gone into remission, but that is far off. I currently work two jobs, have two children that both have ADHD to raise, and a wonderful husband that thank goodness understands my pain.
I think of everyone that has so many difficulties with this disorder, and wish that maybe one day someone will make it easier. Until then, you have to pray, take it one day at a time, hope that maybe one day things will seem a little brighter, and know that you are NOT alone. There are others that feel your pain, are scared of what the future holds, but there will be a brighter day.
Kristie
