I was now spending hours online every day researching my symptoms. I kept coming up with a word I could not pronounce or understand “Interstitial Cystitis”.
As I read about it, I did not want to believe this is what was happening to me.
“Not easily treated”
“Doctors do not know cause”
“Pain as bad as end stage bladder cancer”
I did not want it to be IC. I had never heard of IC before this, as many people haven’t. IC was not very profitable back when I was diagnosed. Typically, the general public only learns of diseases when the pharmaceutical companies come up with pills to treat it and begin advertising. There were not many pills to treat IC, and what they did have was very expensive with a low success rate. Elmiron was hundreds of dollars a month, and took at least 6 months to begin to work. You had a 40% chance it would help. As a bonus, your hair can fall out when you take it!
I was only 25 years old. I could not imagine living another week with my symptoms, and now I was reading I could live with it for the rest of my life?
FEAR. Fear is what I felt constantly.
Fear at my constant pain, fear I was a bad mom because of my pain, fear I could not work anymore, fear I could not hide my symptoms, fear everyone would think I was lying, fear I could not find a way out of the pain, fear there was no bathroom when I went somewhere, fear of bad traffic and being stuck in the car.
Fear of the life I was losing and the dreams that were being crushed.
I went back to the urologist and told him about IC and what I was reading online. He agreed to do an endoscopy on me to look for symptoms. This is where they go inside your urethra with a camera and look around for open ulcers and inflammation – the hallmark traits of IC.
Why was I the one telling my urologist about IC? I had been to him multiple times before this and he never mentioned it. He kept giving me infection tests and would send me home telling me there was blood in my urine. You would think after the 3rd or 4th time he would have mentioned something else. Instead he just kept shaking his head at me.
I went in for my endoscopy appointment in the office. The nurse had me sit on the chair and lay down with a blue paper sheet over me. She inserted a numbing shot up my urethra and then told me, “This may hurt a little”. She proceeded to put a camera up my swollen inflamed urethra while I screamed out bloody murder.
She had to keep stopping due to my violent twitching away from the pain.
The physical pain was the most intense I had felt up to that time in my life. I had hot tears rolling down my cheeks and my entire body was shaking in fear. The searing burning pain in my urethra felt like it took over my entire body.
I later found out urologists put you under anesthesia for this procedure when they suspect IC because of the pain. Not this awesome doctor!
The nurse stopped and walked out of the room. The doctor came back in. He told me I didn’t want to know what my problem was since I couldn’t cooperate. He said to get my clothes on there was nothing more they could do.
I left the office humiliated in massive pain, telling myself I would not ever go back to the doctor. I felt defeated, alone, and shameful.
To be continued...
I was 25 years old.
Melissa is the Author of Healing Through the Pain How I overcame Interstitial Cystitis. She writes about health (physical, emotional and spiritual) from a vulnerable place, after overcoming Interstitial Cystitis and still battling emotional illness. She is passionate about helping women realize their ability to make changes and move forward from difficult situations in their lives.
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