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Hi, my name is Jassica Johnson. I’m a 24-year-old woman from Texas, and I suspect I’ve probably had IC since I was around 13 years old – nearly 12 years. As a child I saw a lot of doctors who would typically not find an infection but would still give me round after round of antibiotics. At 15 I began having very bad pains in my urethra. I would just sit on the toilet and cry for hours. There were times I didn’t even want to get off the toilet because it hurt more to be off it than to be on it. So I would sit there with a giant glass of water and continually drink and pee.

When I was 16 I got my first kidney stone, and when I went to the ER, the doctor, who had horrible bedside manner, was very cold and unsympathetic. She told me I had sciatica and that I needed to lose weight, despite not being even remotely overweight at the time. My parents took me to get massages for my “sciatica” which was excruciatingly painful. It hurt so terribly I would lie on my mom’s lap and cry and cry. Eventually I stopped being able to urinate, so I went to the ER and had to have surgery to remove an 11 millimeter kidney stone and other gunk that had accumulated in my ureter. Since then, I’ve had three additional kidney stones, all but one of which had to be removed surgically.

I continued to have bladder pain, accompanied by pelvic pain so bad that I could barely walk, until I was finally diagnosed at age 21 with IC. But the story, as is usually the case, was only beginning. Now that I had been diagnosed, I looked for a urologist who knew of any treatment options for me. Most doctors only knew of a few prescription medicines, amitriptyline and some others, none of which worked, so I went looking for more helpful doctors. Treatments ran the gamut from Elmiron and Uribel, to countless very painful RIMSO treatments, followed by gabapentin, hydrocodone, and valium suppositories. Nothing was helping.

Finally, only a few months ago at the beginning of 2015, I found a doctor with more treatment options. She suggested the InterStim®system, which worked for the first two months I used it. Then in May, I was suddenly struck by lightning, which was attracted to the live wires in my spine, just like the wiring in a house attracting lightning. The InterStim® device is still technically functioning, although I no longer feel any relief from it. It’s been a very long road, and I imagine that it’s nowhere near over yet, but I’ve been through all this and I’m still here.

My hope is that someday someone finds a reliable treatment or cure for IC, and for all of us who have suffered, cried, been depressed or suicidal, been mistreated, ignored and ridiculed. I myself feel a real need to speak out, to tell everyone I come into contact with about this disease. It is real and painful and more widespread than anyone really knows. There are probably millions out there who haven’t been diagnosed and are trying desperately, as we all have, to find a doctor who believes it is not just in their heads. Fight on mighty warriors, and we will see the day when this is curable.

Jassica Johnson