For those who had IC since childhood

[~*~Christine~*~]

Do you remember having any big flares? I mean not just urgency/frequency but actual spasms, burning, etc?
I'm curious to hear other peoples memories of IC from when they were kids :)

I just remember 2 major episodes. One when I was about 6 or 7, I just went pee one day and it burned so much that I refused to pee all evening, all night and well into the day. While sitting in the back of the car to go someone with my parents I burst out crying because I had to pee so bad but was afraid because I knew it would burn so my mom got me diaper cream, which I put on my genitals and than I could pee with little to no burning. After that the burning and pain in general went away.
The other episode was at Girl Guide camp, when I was 11 or 12, on a hay ride when I burst out crying because the bumping was hurting my bladder so much the ride had to be stopped so I could use an outhouse (so embarrassing)

Now your turn, don’t be shy ;)

[megancolleen]

I believe I had a huge flare when I was 12....I had horrible bladder burning that lasted for a few months....and then I went into a sort of remission. I always had bladder issues from that day forward, but they were very mild and sporatic. I believe that if I had been treated when it first started, when I was 12, maybe my bladder wouldn't be in the horrible condition it is in today.

[~*~Christine~*~]

I agree; I too believe, as well as my mom, if I had been treated for this earlier my bladder wouldn't have gotten as damaged
I hope us "young'ens" who have IC have made it clear to doctors that kids can get IC too so hopefully a lot of kids wont have to suffer, as much as we do, if they are diagnosed and treated earlier

[MelissaJ]

I used to get "stomach aches" all the time when I was little starting from when I was about 6 or so. I have realized that those weren't actually stomach aches, it was my bladder, your stomach is actually higher up, kind of inbetween your ribs and where it hurt was actually my bladder. I also remember having lots of burning, etc. I remember how frustrating it was because it was like I knew something was wrong with me but I couldn't get an adult to understand.

[Sarojini]

Hmmm... like Christine I remember an episode when I was about 8 or so when I went pee one day and it burned so bad I screamed and both my parents came running into the BR to see what the heck I was yelling about. After that I refused to pee for a while until I just couldn't wait anymore; then it only burned a little. Was tested for a UTI at the time and didn't have one. Doctor said something about maybe changing detergents used for washing my underpants.

I also had episodes of serious frequency and urgency, but they would always go away. I think I remember having spasms once too around age 9; my mother kept asking me if I thought I was getting my period for the first time and if it might be cramps, but I didn't start my period until I was 13.

So I think there were indications that there was a problem but it would always clear up fairly quickly and I wasn't diagnosed until age 29 when things got really bad and would not go away at all.

[IC SARAH-CPP]

i also believe I have had it since childhood and my childhood memories are FULL of horror stories. Even in high school, one teacher tried to suspend me for walking out of his class when he refused to let me leave to go to the b-room. My dad came in to the school and told the teacher that if he EVER told another human being they couldn't "relieve their bodily functions again" the teacher would be dealing with ALOT more than an angry parent :) Yeah Dad!! ( I still love that story)
Let me just say my CHILDHOOD nickname was "Little Sarah Leaky Faucet" because of how much I peed. IT hurt my feelings so much but I always laughed along with everyone else. my family was really in to the outdoors and I remember always making everyone mad because we would have to stop ever 15 mins for my bathroom breaks. Plus, we took loooooong car trips ALOT, at least 3 times a year, and there was a RULE that I was not allowed to drink anything unless we were going to be near a rest area or stopping for lunch!
I have SO many memories of sitting in the car, crying quietly because my bladder hurt so bad. When I got older, I never knew I had a problem, I knew I was "different" becaues I peed WAY more than ANYONE I knew ( even my 90 yr old grandma) but I was so used to it, I thought it was normal. HA! I can still remember how shocked I was when someone told me the average number of times someone went to the bathroom was 6-8!! Crazy!
So I had lots of frequency, urgency, burning, pain,whatever- from a very young age. Interesting topic, thanks for posting it.
Love Sarah

[stacey79]

I also have had IC since I was a child. When I was three, I was diagnosed with my first UTI. My mom has had quite a few UTIs and said she knew that was what was wrong. I would go to the bathroom and then tell her it felt like I still had to go. That's still one of my biggest symptoms. As I got older, I continued having "UTIs." They didn't always show up, but the pediatrician was like what else could it be? When I was 5, I went through a slew of tests to make sure nothing was wrong with my bladder or kidneys. I don't think they woudl have thought to check for IC in a child back then. I'm 26 now.

ANyway, later on, burning would always be an issue when I had an "infection." Don't get me wrong, I do think that I did have some infections. I still have them. I just think it was more than that. But, anyway, the burning would make me not want to go to the bathroom. I'd try putting it off. My parents woudl come into the bathroom and run water to help me try to go or make a hissing sound to try to help. They were so very good with me and didn't give me a hard time about having to go to the bathroom more often. It helped that my mom has infections sometimes and understands how miserable that is. My parents still do things to help me when I'm flaring even though I've been married for 6 years now.

My problems got worse when I was 13. One uro diagnosed IC after a hydro then told me I had IC, made it sound like I would be an invalid and wanted to start DMSO right away. My parents weren't crazy about that since I was so young. They took me to a children's hospital in a nearby big city where I was told that I had "Busy girl syndrome" and wasn't going to the bathroom the right way. I saw another uro who put me on Ditropan. Then near the end of high school, I went into remission which lasted through most of college. Three years ago, IC came back in full force.

I do relate to the coffee can, though. I like to go fishing with my dad. When I was little and went out on the boat with him, my brother and grandpa, he would take a coffee can for me to use when we were out somewhere that there wasn't a bathroom, which happened quite a bit. This past spring, I went out with him and my brother and they were good about running me back to shore when I needed to.

[~*~Christine~*~]

Sarah, you bring up an excellent point about "washroom rules" in schools. It's appalling that anyone has the right to prevent anyone, IC or no IC, from relieving themselves when they're uncomfortable. I'm glad that your father stepped in and did something about it

and thanks to everyone who posted, it's interesting how similar a lot of our experiences were; lurkers, feel free to contribute ;)

[kayrol]

OMG, the school "bathroom rules!" I was about 6 or 7 and I raised my hand in panic, waiving and waiving and squirming and the teacher would not acknowledge my raised hand and plee to answer my question. Soooooo, I couldn't hold it any longer and peed right there in the desk chair. It was the most humiliating thing. Then, I remember having to go so bad walking on my way home from school around the same age or older and when I got to my front door I just couldn't hold it anymore. Went through my snowsuit and dribbled into my plasic boots, you know the ones with the button on the side and the elastic band that enclosed the button. THEN, one more time I "couldn't hold it" and went in front of my bathroom door on the wood floor.

Yes, I have had urgency problems since I was little. Isn't it interesting?

To make things more interesting, how many of those with bladder symptoms in your younger years had sexual abuse as a child? I read that this also attributes to bladder dysfunction. NOT psychologically, but because of some bacteria introduced at a young age from the abuse attributed to bladder issues later in life. Someone else many know what I'm talking about, I can't remember what exactly.

[stacey79]

I have heard others say similar things about sexual abuse. I have had bladder problems since I was three. But, I've never been abused sexually or any other way. I do have a family history, though. My mom has had a lot of UTIs as has my grandma. I have two great-aunts who have IC. I think there could be a genetic component, but then again I know other ICers who no one else in their family has any sort of bladder problem.

[~*~Christine~*~]

To make things more interesting, how many of those with bladder symptoms in your younger years had sexual abuse as a child? I read that this also attributes to bladder dysfunction. NOT psychologically, but because of some bacteria introduced at a young age from the abuse attributed to bladder issues later in life. Someone else many know what I'm talking about, I can't remember what exactly.
hmmm I've never been sexually abused so this certainly doesn't apply to my case, but it may trigger IC in a person who already has it

[~*~Christine~*~]

I think there could be a genetic component, but then again I know other ICers who no one else in their family has any sort of bladder problem.
I think so too. My mother doesn't have IC but she has autoimmune problems (IBS, Lupus and Fibromyalgia) so I believe IC, at least for me, is due to autoimmune problems from my mom

[itzbezzy]

my mom says that when i was a baby, i used to break out in horrible diaper rash whenever i got fruit. my pediatrician basically told her i'm incredibly acidic and had to have my fruit juice cut with water and to layoff the whole fruits. so i guess that was my first bout of it, really. thankfully i have no recollection :p lol

[stacey79]

Speaking of diapers, I had forgotten that my mom told me she could only use one specific brand for me. Anything else would irritate my skin and break me out. Guess I was sensitive even back then. Interesting, huh?

[Katrina]

I don't really remember life before I was 12 so I can't speek about being a young kid. My symptoms when I was 13-18 were mainly a strong sensation of having to go. I didn't have burning much but I was on a diet for Inflammatory Bowel Disease so a lot of the big flare things I couldn't have. I was also on an antibiotic and anticonvulsants so some of symptoms were treated by meds I was on for other things. Even with all of that though I would have a lot of frequency at night...especially if I had a period and when we went on trips.
My diagnosis was at age 24 but doctors and I believe strongly that it started for me around age 12 or 13...13 is when I started going to the doctor.