Be Diligent & In Control
I am an IC patient and who went through about twenty years of problems, pain, and numerous cystoscopies before a doctor finally diagnosed IC. He had me try other unsuccessful medications prior to prescribing Elmiron. I’ve been on Elmiron nearly twenty years now after numerous tests and experimentation, and it works very well for me. Because of additional bladder problems, ten years ago I had the mesh implant and I also subsequently had one distention. Fortunately I haven’t needed further surgeries! Unfortunately, after all these years, I believe there remain too many urologists who are unfamiliar with IC and do not understand the persistence and intensity and severity of pain it produces. In fact, the pain is so tenacious that if I miss even one pill, the spasms begin again, so I have to be diligent and in control of my care.
Years ago I participated in two studies through the University of Maryland. A cousin and both of my children were included as well to see if perhaps they may develop IC in the future. Sadly, the results were not definitive. I wish I could know for sure that my children will be okay. Researchers are investigating, so perhaps someday that will be possible.
Occasionally I hear of someone with the same problems, and I always direct them to the ICA website and suggest they see a urologist who understands IC because they can make all the difference.
Wilma Jeanne Brown