/, Children & Teens/IC Awareness Daily Fact #10 – Children With IC/BPS Face Many Challenges

IC Awareness Daily Fact #10 – Children With IC/BPS Face Many Challenges

IC Awareness Daily Fact #10

(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!

By |2017-01-31T11:24:09+00:00September 10th, 2014|Awareness, Children & Teens|1 Comment

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.

One Comment

  1. Mroberts1206 September 12, 2014 at 4:02 pm

    Hello, my name is Melony. A little about me… I am 27 years old, a full time working mother of two. I was finally diagnosed with IC back in December 2013 and had a full hysterectomy back in April 2014. I have been struggling with the bladder and pelvic pain issues for the last 22 years. Growing up was very difficult and I still think about what I went through. The first time I was taken to the a doctor about my bladder was when I was 5 years of age. My grandfather ( my legal guardian then) took me because he was concerned that I can not stop having accidents during the day and night and the multiple UTI’s. In elementary school, I would try to hold my bladder because I was embarrassed to ask my teachers and parents to go to the bathroom. I felt I was in trouble because they would make remarks like, ” Again?!?!” or ” Fine, let’s go but hurry up!” because I was frequently asking. Holding my bladder wasn’t always successful. For an example; In the second grade, I was squatting and holding my bladder during recesses. When the whistle was blown for all the the kids to go in, I had to get up and ended up soaking my pants. By this time, I started wearing light jackets all the time and wear them around my waist so know one would know I peed my pants. I remember kids and adults would be like, ” Ewwww what’s that smell! Smells like pee! ” . Luckily no one ever suspected it was me, maybe the jacket around the waist idea worked. I wore jackets around my wait until the 7th grade. I remember when I was 9 years old, I spent the night at my friends house and woke up with pee all over her and her bed. I was so embarrassed! Her mom was making jokes and put the mattress out in the front of the house for the whole neighborhood to see. After that I never spent the night at anyone’s house ever again. When I was eleven, I wet the bed once again and my mother had the last straw I guess and just lost it. She was screaming, yelling, and embarrassed me in front of the whole family. My mother actually ran to the kitchen, grabbed the tape measure, wrapped it around my waist, starting cussing in her native language ( which is Thai), and said you’re going to start wearing diapers just like the baby you are! I finally stop wetting the bed when I was about 12-13 years old. Around fourteen is when I started experiencing the horrible pelvic pain. The days I started my period was the worse. I would scream, cry, and curl up in to a ball as bad as the pain was. My mother didn’t know what to do to when those episodes would happen and would take me to the ER. The doctors would just brush it off and say, ” Oh, they’re just period cramps.” or even ” She’s just being sensitive or possibly is just depressed and wanting attention” . When I started dating around fifteen, I would have to leave dates because I would get those uncomfortable urges to use the restroom and half to soak my self in hot baths. I remember being 17 and overhearing the nurses saying, ” Is she really just here for menstrual cramps? What a pussy!” In my relationships, my boyfriends would see the episodes and freak out too. They would urge or force me to go to the ER cause they didn’t what to do or help me. At this point ( in my early twenties ), I would refuse and fight not to go to the ER because I knew there was nothing the doctors would be able to do and did not want to laughed at once again or be told it was just another UTI. I am now married with children with no social life or sex life and don’t know how long my job is going to keep me due to missing as much work for appointments, surgeries, and call offs from the pain. I am very happy to see the awareness is out there now and I’m not the only one. I still and always will put up a fight and not give up! I have been misdiagnosed for the last 22 years brought repressed memories and has affected my entire life. I really hope this story can help others and thank you for listening!

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