Living with Interstitial Cystitis

Our story begins back in 2000, my husbands Grandmother had just died from luekemia [leukemia] in April and in May all of a sudden my husband started having pain in his back and numbing of his legs, along with spasms everywhere. We started out with our family physician and he sent us to a Urologist My husband was diagnosed with prostatis [prostatitis]. He took Levaquin for it, but it never helped. In the mean time I got pregnant with our second child, so what should have been a joyous time turned into a nerve wrecking, scary time. All the doctors wanted to do was prescribe pain killers and Levaquin.

My husband went from a man that worked 50 to 60 hours a week as a diesel technician, that came home and cleaned our yards, the house, detailing the cars, playing with our son and loving life, to a man that barely worked 30 hours per week and laying on my couch the rest of the time. Then one night he came to my work and told me a bullet would be cheaper and easier. I knew then that I had to do something. Our family physician was very helpful, but at a loss of what it could be. Our daughter by this time is 6 months old and the doctors were telling me he was just depressed and just wanted the pain pills, that he never would take because his thoughts were they are just trying to mask the pain, not fix it.

I started taking my husband’s medical file and knocking on the doors of doctors asking can you please tell me what is wrong with my husband. Then finally in September of 2001, I contacted the prostatis [prostatitis] foundation and asked them for help and when I described the symptons the wonderful person on the other end of the phone directed me to the IC website and when I got there it was just like reading my husband.

The next day I called a doctor over 200 miles away and made an appointment for that afternoon. We drove there and saw him and he asked if we could stay overnight and have the cystoscopy done to see if that was really what it was, and of course we agreed, so we got a motel room and spent the night. By 10:30 that morning it was confirmed that he had IC and that his bladder now will only hold 500 CC’s of fluid, instead of the normal 1100 CC’s. The sad part about all this is that he had had the same test performed in June in a Urologist’s office and they saw nothing. Now 7 years later my husband is dealing with the IC, but really has to watch for flares, this is the first time he has had a flare that we can’t control, but we are hunting a urologist that has plenty of experience in IC since we have moved more than a 1000 miles from the original doctor that diagnosed him.

So my advice to all the wives out there with husbands that have this condition is hang tough and believe in your spouse, because this is not in their head, but as described to me by the nurses and doctor as a woman in labor. So to everyone out there man or woman, keep fighting until you find a doctor that believes you and does not treat you like you are just another hypochondriac, and remember what is normal for you may not be normal for the next person, because when we were created we are all different or else we would not have different DNA or different fingerprints. Hang tough and keep fighting because that is what it takes. We are not perfect so why should we think the doctor’s are any different. Thank you for your time, I hope this message helps someone out there.
Sincerely,
Bama in Missouri