Any ideas??

[DaNa WaNa]

Hey my name is Dana & im almost 16! yay!! But anyways ive had IC for about a yr & a half now and we think its getting worse b/c nothing seems to work anymore. It started a few yrs ago when i had to have sugery to remove an ovarian cyst that was the size of a grapefruit & had twisted 2ce and then another one to remove my ovary and then i figured it was all over & this happened...and as much as i try to act okay & as if it doesnt aggravate me it doea. & i miss so much school it aint even funny so im WAY behind!
So basically i was wondering if yall had any ideas that have worked for yall.(ya know for school, treatment anything really)..I would love to hear them!

Thanks & i hope yall are feeling well!!
<3 DaNa WaNa <3

[Sarojini]

Hey Dana and :welcome:

I'm glad you found us. Have you looked at our Patient Handbook at http://www.ic-network.com/handbook yet? It's full of helpful ideas ... it lists treatments (maybe some there that you haven't tried yet) and has a large self-help section that includes the IC Diet. If anything, if you haven't tried the diet, you should give it a shot. Many of us find that foods, particularly acidic ones like orange juices and Cokes, set off our bladders.

I'm sorry you're missing so much school. I know it's important at this point in your life! Have you and your parents discussed this issue with your doctor? It might be helpful if he/she knows exactly how much school you've missed so he/she knows how much IC is affecting your life.

Again, :welcome:

[green_the_fish]

Hey Dana. I'm also in high school. I'm 17 now, but I was 15 when I got IC.

Wow, having a cyst that big has gotta hurt! Abdomnial surgeries can be a trigger for IC.

Last year, I used to miss school, too. They sent a social worker dude to talk to me and everything. Once I explained that it was because I have a chronic illness, though, he was cool with it. I've been feeling much better this year, so my attendance has improved.

What treatments have you tried so far? If you wanna know what I've tried and I'm on, just check out my sig. All the links lead to RemedyFind pages, and most of them include my own ratings.

[DaNa WaNa]

umm so far ive just had the intilations with and w/o the DMSO but they dont work anymore && weve begun to think that the DMSO is making my symptoms worse b/c after i get it i get really bad for a few days. We're supposed to be goin to a new doctor who specializes in IC but b/c of Katrina her office is closed && my doctor doesnt no anything about it but he acts like he does..so yea

How did yall keep from failing school from missing so many days? like not jus because of the absences b/c i got that covered but by being behind on everything...

[green_the_fish]

Oh, that really sucks about your IC doctor having to close their office 'cuz of the hurricane.

A lot of doctors don't know much about IC. From my experience, though, most doctors don't like to admit when they don't know something. It seems many of them would rather tell you something that turns out to be wrong than to admit that they don't know.
The first doctor that I went to with my IC symptoms is a good example. I was having all the symptoms of a UTI, but the urine cultures came back negative. So, instead of just admitting that she didn't know what was wrong with me or how to help, she told me it was all in my head! Good thing she didn't know I was bipolar, or she would have really called me a nutcase! I was really hurt by the way that she judged me like taht.

I hear DMSO isn't being used as much anymore. New studies are now indicating that it sometimes hurts more than it helps. I tried it once, but the doctors couldn't even get the catheter in because of my urethral pain and PFD. Pelvic floor therapy took care of the PFD, but I still wouldn't want to try again. I would rather try all of the non-invasive therapies first.

Thanks for updating your sig! That really helps people around here know what you've tried and what you're on so they can help you. Looks like we're taking a lot of the same meds, too.

Yeah, I know what you mean, school and IC don't mix. I'm not failing, but my GPA is pretty low (2.4). It's hard for me to give advice when it comes to this, since I'm not doing so well myself. It's hard. I just come here for support and try to deal with it.

[jessied]

hi im also almost 16 i have had ic for a yr i miss so much school its not funny to have you tried to get on homebound my school wouldnt let me but maybe your school will let you it is so hard having to go to school with so much wrong with u i know

[DaNa WaNa]

Thanks for all of yall help. Even though im not happy yall have to deal with this It really does help to know that there are others going through the same things. My mom && i have talked about homebound and homeschooling. But i love to go to school as much as i can so i want to try to stay in school. Were going to try to work something out with the school for next yr where i can go to school when i can & get my work sent to me when i cant.

But i have another question im not sure if its just me but can yall participate in like P.E type stuff b/c it hurts when i excersise too much but ppl dont understand that am im wondering if its just all in my head..


ThaNk fOr EvErYtHing!

<3 DaNa WaNa <3

[jessied]

i cant do really anything in pe but i also have chronic pelvic pain,fibromalysia so it makes it hard for me but sometimes i cant b/c of the ic

[green_the_fish]

Oh God, PE sucked so bad :(

Luckily, I finished all of my PE credits my sophomore year, so I haven't had to mess with that anymore. But last year, it was so hard for me. I trying to explain to my teachers ans classmates that I just couldn't do certain things because of my condition. So many of them just didn't get it.

People would say stuff like: Ok, so you have some kinda sickness in your bladder; what does that have to do with you not wanting to _____ (do laps in the pool, run the mile, etc)? Your arms and legs are still fine! You look so healthy, I bet you're just not trying out there!

I felt really singled out at times. I got picked last for teams 'cuz many of the people in there thought I was just being lazy and whiny. I dunno, maybe I did whine a lot, but I was in so much damn pain! Once in a while, a girl would break her arm, and then everyone would understand why she wouldn't be able to do certain things. But with me, seems like many people thought I was making a big deal over nothing.

I remember this one time that we all had to run, and I tried really hard to keep up with everyone. Right towards the end, though, my bladder just set on fire, and I pretty much collapsed. I actually started crying because I felt so crappy right then. The friends I had in that class tried to make me feel better, but I just felt terrible. Stuff like that really got me down.

The funny thing is: now that I'm not in pain, I go to the local gym regularly. This morning, I spent 15 minutes running on the treadmill, half an hour working out on the machines, and another 15 minutes running. So it's not even that I'm a bum and don't care about my heath! I just can't work out when I'm pain, and I can't stand it when people who don't even know what I'm going through try to push me into it!

Well, sorry for the rant. I haven't really thought about this crap since then. I almost forgot how bad it sucked. I'm sorry.

If I could go back, I would have tried to get a medical waiver to not take gym at all. It's just so hard because the gym teachers and the other students just don't understand. If you can, I would try to get out of it altogether.

Take care of yourself :grouphug:

[DaNa WaNa]

well i took ROTC this yr so i wouldnt have to do PE and i got a medical waiver to excuse me from physical fitness but i failed it so i cant be in it again. And i dont even know if my doctor will understand and give me a medical waiver anyway.
IDk like my moms gettin me yoga to try to start excersising & i do excercise when i can definately but its just that i cant most of the time..idk i kinda try to just blow it off b/c i dont want everyone to think of me as the poor little sick grl. and when ppl do find out im sick b/c of all my meds there like "Omg are you dying? Are you pregnent? Can you have kids?" and it gets old...

i dont even know what to do anymore sometimes... :hmm:

<3 Dana