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"My struggle with IC"

"I've learned that life doesn't revolve around the pain."
A Sixteen Year Old's Journey with IC

By Kellie (Submitted Spring, 2004)

I'm sixteen years old and was a normal, fun, energetic student until August of 2003. High school is supposed to be the best time of your life but for me, it's the worst. I had just gotten back from vacation and thought I had a UTI because of the specific pain I had.

I dealt with the pain for a few weeks because I was afraid to tell anyone. I didn't think my mom would believe me because I had had the pain for a few weeks. A few weeks later I went to the doctors and was tested for UTI and everything came back negative. I was really suprised. My doctor prescribed me pyridium since I was having such bad pain. This was the first time I had ever taken pyridium. I didn't know then that it would soon become my life-saver. The UTI feelings went away after a few weeks, although the burning feelings remained.

Over the course of the Fall and Winter I kept going back to the doctors complaining of all the same symptoms: frequent urination, burning, and discomfort. My mom and I begged for pyridium to hold me over until we made an appointment with a specialist and could fix the problem. My pediatrition referred me to a GYN specialist in the adolescent unit at Children's Hospital. On top of all this pain, I had the worst periods. I remember waking up at night crying my eyes out, thinking I was going to die I was bleeding so much. I would wake up my mom and sit and talk to her.

I had another strange symptom, I had atleast 2 nosebleeds a week while I was sleeping. Dr. Marc Laufer, the GYN specialist, said that I almost definitely had endometriosis. He said that bladder pain can go along with it sometimes. We made an appointment for my first surgery,a laparoscopy. He went in and found stage one endometriosis. He treated it by putting me on Yasmin and gave my mom and I a very intense list of treatments. He said he wanted to put me on a shot called Lupron, where I, a 16 year old girl, would go into a menopausal stage! My mom and I said "No Way!" and we chose a less drastic treatment and started Yasmin, a birth control pill used to stop my periods all together. He said that my bladder pain would go away after surgery.

Two days after surgery I was in much worse pain than I was before. Meanwhile I had missed 18 days of school and I was failing most classes. My teachers didn't believe me why I was always absent. People at school would ask me what was wrong and I would just say it was my stomach because I was embarassed to have to explain what endometriosis was. Our next step was a urologist at Children's Hospital. My mom and I had vaguely heard about IC and when she asked the doctor about it he said, "Thats a cop out word for someone that has pain that no one can diagnose."

I'm not a doctor and didn't understand IC at the time. He scheduled a cystoscopy and said that he would most likely find nothing and that my pain woiuld eventually go away! Severe inflammation was found in my bladder and he did nothing to treat it. On top of all this, he never bothered calling us back with my biopsy results. To me, this doesn't sound professional. HE SAID HE COULDN'T GIVE ME ANYMORE PYRIDIUM AND THAT IT MAY JUST ALL BE IN MY HEAD! MY FAMILY AND IWERE FURIOUS! Who just wakes up one day and decides that they want to make up an illness ?

As far as I am concerned, my sophomore year is ruined. I feel so betrayed by this doctor. This all sounds very strange but, a few months ago, my mom went to a fortune teller and they read her cards. I didn't know she went until she came home crying and I asked what was wrong. She said, "I went to a fortune teller and the woman told me you were sick." She said that she had picked a card that showed a new born baby which meant that after treatment I will be a new born baby again. The fortune teller gave her a brochure of a homeopathic practice and said that they are going to be the ones to help me. We decided that anything was worth a try at this point so we made an appointment. When we got to the doctors office and went over my story with the doctor I showed her my pictures from the cysto. She immediately said "OH MY GOD! Why weren't you treated for this?"

The picture is supposed to show normal (thread size) veins but instead my picture showed huge, worm sized veins. She said that I had Interstitial Cystitis. In her office, I tried a lidocaine 5% patch and it was very helpful. She also put me on ELMIRON. Elmiron is a new drug that replenished the broken lining of the bladder. She said I could be pain free and hopefuly back to normal in up to 6 months! I was so thankful and relieved! I started the Elmiron and I seem to have no side-effects. She also said that she would put together a homeopathic remedy as well for the symptoms of IC.

I'm so happy that someone is finally ready to put the time and effort into helping me. I'm so lucky to have such a supportive family who is fighting for my recovery. Every day I wonder what I did to deserve something like this. I think about all the good person I am and wonder why God would do this to ME? I don't get into trouble, I help out my family, I worked since I was 14 and even worked while I was sick. I did well in school before this happened, I even help out at school doing Best Buddies (working with mentally challenged students). Although I feel like I don't deserve this, I like to look on the bright side and think that it's only making me a stronger, better person. I've learned that life does not revolve around the pain, suffering, and feeling bad for yourself but it revolves around the good times and the people who love you and want you to get well.

Revised: 3/01/05 - kj

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