By Anonymous

How It All Started

I just went through one of the most frustrating medical things I have ever been through!

I started noticing these white flecks in my urine. Not having any other symptoms, I just thought maybe it was some sort of female discharge and thought nothing of it. They kept coming though, more and more. So February 2nd I went to my primary care Dr. and told her I was peeing out these things and thought they should be checked. She sent me to the lab for blood work(?) Why, I'm not too sure. Well, the next day I woke up with TERRIBLE back flank pain and was awake from 3 am on. I called the Dr and they told me to come in to pee in a cup. I did and they said I had a bad Kidney infection. There started my nightmare!

More Interventions and Antibiotics

Four days into the antibiotic I called and told the Dr. that they were not working, I still had horrible kidney pain. She sent me for a CT scan and an IBP. Both were negative for any problems (stones etc.) Still in tremendous pain for about a week at that point, she sent me (after tearfully begging for help!) to a urologist.

The urologist said too that I had a bad kidney infection and needed more antibiotics...3 weeks worth! I tearfully said, "I don't think this is an infection." He responded smugly, "Well then what is it?"  I COULD HAVE SCREAMED!!! Nothing better than getting a non-sympathetic doctor!!

Three weeks after the antibiotics, I went back with the same symptoms. He then said, "Oh, it's such a terrible infection you need to be on Cipro for a month!" I was SOO annoyingly frustrated, but didn't know what else to do. Any other specialist would have taken over a month for me to get into and with the pain and sleepless nights, my hands were tied.

Next Came Hospitalization

One week into the Cipro, he calls and tells me that a urine culture came back and that I had some rare type of infection that cannot be treated with oral antibiotics. He ordered 14 days of IV antibiotics. I got a pic line inserted in my arm and there I was at the hospital everyday for 14 days!! I was hopeful that maybe he did actually figure it out. The last day though of my IV treatment, March 29th, I called my Dr's office in tears saying that I still had the pains.

They ordered me to be admitted into the hospital. The first few days I was there they were sure bound and determined to get rid of this "infection." I was on two antibiotics at a time around the clock.

Diagnosis at Last

Monday April 3rd was my day of reckoning! The doctor did a Cystoscopy. And there it was, a nasty case of IC! After almost 7 weeks since my original appointment and 7 antibiotics later!!

Because I didn't have the normal symptoms, an infection was all that made sense to the doctors. They said the flecks in my urine were actually pieces of my bladder lining. I later found out that neither one of my doctors actually tested the flecks in my urine. If they had, they would have been pointed in the right direction.

I am still having horrible pain and am hoping to soon find a more knowledgeable doctor in my area. At least now I can sleep at night knowing I have a diagnosis!!!

I am really thankful for being able read other stories and am very thankful to have my husband and family to have supported me in my ordeal!! I am 26 and still am trying to have a good attitude that I can get over this!

Editor’s note: This story was originally published on the IC-Network.

Reference: Kidneys and the Urinary System section on Better Medicine

Did You Know?

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Interstitial cystitis affects as many as 8 million U.S. women.