Anyone here in Highschool?

[a11y]

Is there anyone here who's in highschool here?
I would love it if I could relate to someone other then the older women??

[green_the_fish]

Hi. :hi:
I'm a sophomore in high school.
I don't have a diagnosis of IC right now, but I've been experiencing chronic pelvic pain for eight months. I've had experiences with many different medications and forms of treatment. I would be happy to share this info with you.
Feel free to PM with any questions, or post here.

[a11y]

I'm a sophomore too.
It's great to know I'm not the only one young who has this...!
so are you planning to do a cysto/hydro? or something to comfirm?

[green_the_fish]

I had a cystoscopy with hydrodistention back in October. It didn't show any excessive glomerations, just what the operating urologist described as "a little redness" :hmm:
In 1 out of 10 cases, IC is diagnosed without the prescence of glomerations or ulcers on the bladder wall. That means that IC doesn't always show up in the cysto+hydro, especially in new or mild cases.
That's why I'm still undiagnosed.Well, also the fact that I ran out of health insurance about two months ago. Don't worry too much about me though, I've been doing okay on OTC pain meds, self-help treatments, and a rationing of my leftover medications. I've already applied for government health insurance, so it should be coming soon. I'll get more testing done after that.
Personally, I think I probably don't have IC. There are many causes of chronic pelvic pain besides IC. I could be wrong though, so more testing is in order, as soon as I can get that hooked up.
How about you? Have you had the cysto+hydro yet?

[a11y]

I actually know someone that has "non-classic" IC. ( I have her email address if your interested)
Yes, I've had the hydo/cysto back in Febuary of this year. It showed "An impressive amount if tears", which obviously confirmed the dx.
I have had a pretty rough road trying to find a doctor (uro) who was willing to treat a 15 year old for I.C. The 1st guy was a pedatrition so I didn't know very much about IC, and the 2nd guy was a throw-back...he basically told me that I couldn't have because I was too young, and the 3rd guy..well that the one were sticking with, thankfully.
Anyway..I'm done ranting..

[green_the_fish]

Well, the reason that I think I probably don't have IC is because my symptoms haven't responded to diet changes, Prelief, baking soda, or Elmiron.
I was on the diet quite strictly for three months, and my pain level never decreased as a result. Prelief also didn't alter my pain, neither did baking soda, mixed in water or in pill form. I took Elmiron for about four months, until my uro took me off because my symptoms were so inconsistent with IC anyway.
I'm looking into having a laproscopy done when my health insurance returns, as well as an MRI to check for uterine fibroids, and possibly a 'static emg' scan.
I'm not gonna give up 'till I find what's wrong with me, and get it fixed.
I've also been through many uros, I'm on my third right now, not to mention all the GPs and emergency room docs.
Some docs and uros are scared to treat us teens, 'cuz they haven't done it before. There will always be people who are afraid of what they don't know, I guess. There's also a stigma on young girls, that of "making things up" to "get attention". On top of that, there are teens who abuse pain medications to get a buzz.
I know you have a lot to fight through on your way to get proper treatment. I do too. I guess we'll just have to hang in there and support each other :)

[Portia17]

Well guys, my ic did not respond with elmiron or diet etc.

It responded somewhat with pain meds from pain mgmt and maybe just maybe with dmso

Hang in there

Did you guys ever get a hydro done to see for sure?

[green_the_fish]

Hi Mary.
My undiagnosed pain didn't respond to diet or Elmiron either. I couldn't handle the DMSO treatments.
My cystoscopy with hydrodistention didn't show anything diagnostic of IC.
:hmm:

[sacausa]

I am in highschool and was diagnosed with IC via cystoscopy with hydrodistension and biopsy. One pediatric urologist told me (after looking at the cystoscopy pics that are gruesome and look painful), "I wouldn't give someone of your age such a life sentence."

[XoChelsey03Xo]

Hey! I'm not in high school anymore, but I'm only 20. I'm in my 2nd year of college. I had IC in high school even though I wasn't diagnosed with it until after I graduated. I understand how you feel to be so young and like your the only one with IC. I had an interstim put in on March 28th and I feel like I have gotten my life back. Just remember your not alone. Chelsey

[a11y]

thank you!

[green_the_fish]

Thanks for sharing Sacausa, and Chelsea :)
Chelsea, did the InterStim just help with your urgency/frquency, or did it help your pain as well? Well, if you have pain, that is. I know it's made for urgency/frequency, but I've also heard some say that it's helped their pain.
I hope they make some kind of InterStim or Bion for treating pain. That's what I need.

[Frank]

Hey,
Senior in high school, have had IC for 1.5 years.