(By Jill Heidi Osborne, ICN President) It’s hard enough to face pelvic pain as an adult, but can you imagine being a young child who can’t sleep through the night, can’t sit through class and who may not be believed by their families or doctors? Children as young as three years old have been diagnosed with IC. They (and their parents) have have a difficult road to travel because young children often can’t verbalize where they hurt or what their symptoms are. They certainly cannot advocate for themselves and are often disappointed by adults who minimize their struggles.
I was attending my first National Institutes of Health meeting back in the mid 1990’s when one IC researcher, in fact the only researcher who was actively studying children with IC at the time, had the audacity to say that children can’t feel bladder pain to an audience of over one hundred other medical professionals. Astounded, I was the first to stand up and challenge that statement, sharing the story of two young girls with IC in Utah who were in so much pain that they asked their mom if they could go to heaven. True story! I was thrilled to see Dr. C. Lowell Parsons standing behind me who then affirmed exactly what I said. Let me be perfectly clear. Children do feel bladder pain!!
But it’s hard when there’s no pediatric urologist or researcher in the USA (and perhaps in the world) who has taken a strong interest in treating IC in children today. As a result, children are often treated by pediatricians with no formal training about IC and/or who might make blanket statements like “he’ll just grow out of this.” Worse, we don’t have diagnostic and treatment guidelines that have been adapted for a child’s size and body.
We also can’t forget the struggles that a teenager with IC can face, including something as simple as restroom access at school. Some schools lock bathrooms and, worse, give students detention if they need to use the restroom in the middle of class. Yes, that really has happened to IC patients. Throw in challenges with food, making friends, enjoying social outings and, of course, dating and life becomes very complex for teens who might already feel overloaded.
It’s important that we work together to help improve the lives of children with IC. One of the first things you can do is share the name of any pediatricians and/or urologists who have a strong interest in treating IC and/or pelvic pain in a pediatric population. Click here for more info on making a recommendation.
Did your IC symptoms begin in Childhood?
We’d like to hear your story! What struggles did you face? Were you believed? Did you receive any treatment?? Were you shown kindness? What obstacles did you face?? What helped you in that journey? Please share your story with us!