diagnosis

[ninatorres]

Hi! I'm a 18 yearold girl, I don't know if I have IC, but have had symptoms for about a year and half now..Have had many urine tests and ultrasounds, but nothing..finally got to a gynecologist and urologist this summer..gynecologist didn't know what to do with me, because I'm not sexually active and don't have gynecological complaints i guess..My urologist thought it would be good to do another urine test just in case..that showed nothing..I get so stressed out with urine tests, i can't sleep and am afraid i do it wrong..there are like instructions, that you can only let in the middle part urine, not the beginning or the end..i have a question..when a bit of the end urine goes into the cup, does that effect the results..probably a stupid question but yeah..

anyway, the urine test was ok..and the doctor put me on Uroflow..it should relax the bladder muscle and reduce the contractions i guess..but somewhere i read that if you have ic, then alcohol for example is not good, because it relaxes the bladder muscle and causes more problems..i don't know :(..i have taken the medication for almost two weeks now..i can feel the muscle being more relaxed, but the pain hasn't gone completely, i still go pretty often..

also, does pool water have a bad effect on bladder? chlorine..i really would want to start going swimming several months a week..tried last week once, the night after and the next day's morning had burning..i don't know if it was from that or something else..

I don't know if I should tell my doctor that maybe i have IC..He told me last time that usually people with my kind of problems are young people, who have just started being sexually active and old people..i'm not neither one of them..I live far from US and here we don't have elmiron or prelief i guess.. I'm really stressed out..At school especially and worried about bus trips etc..I'm just so sick of this

I'm not on IC diet and I think if I start now, I won't be able to tell later, if the symptoms got better because of the diet or pills..what do you think i should do?
about my symptoms: i feel pain in the lower part of my bladder/uretrha..I feel worse usually in the mornings and evenings..especially before going to bed sometimes i get anxious, because i feel pain, but i don't want to go again..also, i was wondering, do you feel the pain depends on your body position?? when i lay down, it gets worse for me..when I walk, I feel it..when i sit in one place, it's not so bad..though sometimes is..Sometimes i feel pain/burning feelingduring the end of urinating....but most of all what bothers me, is the frequency..I pee about 8-12, sometimes more times a day, when i used to pee 4-5 times a day..i hate going to school, because i always think about it, when i should go etc, i go almost every break (every 50 minutes), sometimes i hold it out for two lessons, when those lessons are not so stressing or whatever..I've become a different person, I don't want to go out, to the movies, to museums, on long bus trips..i've become embittered kinda, having the attitude, that yes, i want to be alone, at home and not go anywhere..:(

when i got first symptoms ayear and half ago, i thought i had some kind of phobia..the symptoms didn't start out strong, so for a while i thought i was overthinking it..but then i realized, if i wouldnät feel the need to go, i wouldn't have to go..but i do feel the burn...such a long post, but yeah, i had to get it all out..when i talk, i talk endlessly, sorry :D if you could give me any kind of response, i would really appreciate it :) maybe advice about the diet, should i start the diet now..and give me like and example of a diet, what for morning, lunch and evening..
Posted on 09/18/10, 04:12 am

[alycat]

Hi Nina

I was diagnosed with IC when I was 18. I had all of the symptoms you describe. I spent a long time getting urine test after urine test. Don't worry about the beginning or end thing, it's really actually pretty hard to really screw up a urine test (I've done so many now I could probably do the damned things in my sleep, lol).

I would mention IC to your doctor. Ask for a hydrodistention perhaps, that's what my urogynecologist did when I came in with issues, and that's when they saw the signs of IC.

I would get on the IC diet immediately. I didn't start to feel better until I did, drugs or not. I know it's really hard to stick to the diet when going to high school, because you don't know the ingrediants for anything on the menu. I would pack a lunch if you can to save some of the pain.

I hated my last year of high school, in fact I almost missed enough days that I would have had to repeat. Talk to your teachers. Tell them you are experiencing pain. They will be understanding about it, and if not bring it up to the school administration. Once I told my teachers that I needed to be able to get up, most of them didn't give me much hassle for it. That helped me immensely. I had several teachers who allowed me to turn things in late on days that I couldn't get to school because of a flare.

As for what to do on the diet, that takes some learning, but I would print out the IC diet that is here on the site, and start there. Learn to always, always, always read ingredient labels. Usually the more 'raw' a food, the easier time you'll have being able to eat it.

Wow, sorry for the long post, but I remember being in your exact spot and not knowing anything. This site will be very helpful, I promise. I didn't find this site until a year into my diagnosis, and it helped immensely. I've had IC for 4 years, and I still come back here often for tips and support.

[ninatorres]

@alycat Thank you so much for your reply! :) yeah, i think it's a good idea to print out the list of ic friendly foods. i have thought about suggesting IC and cystoscopy or hydro..to my doctor, but haven't had the guts to do it, last time it seemed from his look i could see that he probably hadn't had patients like me before..i mean, so young and having bladder pain without anything showing in tests..i'm afraid he might not believe a girl at my age to have ic, not know about ic or smth..my mom also suggested i wait what the doctor has to say and thinks..actually, my mom doesn't take me very seriously, she thinks that when i don't complain, it means i'm OK..that's why she was surprised last time to hear that my symptoms haven't gone away..but we'll see..I'll try to do my best with the diet..it's hard though, with people around me eating pretty unhealthy :( but i'll have to start taking myself seriously..it's my senior year and last year was a torture, this year i'll have longtaking exams i have to sit through and different trips probably, so i have to get better soon! :( anyway, thank you so much for responding :)

[Deliamh]

Hi - my daughter was diagnosed when she was in high school and I do see many similarities between your experiences. First of all I would suggest you have a talk with your mom, or show her this message. As a parent of a teenager who already had typical teenage mood swings I found myself a little confused by what I visually saw and what my daughter told me about how she was feeling. It seemed to me that the symptoms would come and go based on what she was supposed to be doing that day. One day she would tell me she was in pain and the next moment she would be just fine and wanting to go out. There were some nights that she would go out with her friends yet wake up the next day and tell me she did not want to go to school because she was not feeling well. I learned later that she was holding back some days and not telling me when she was not well so I obviously thought everthing was just fine. Over time though it started to happen more and more and her pain was becoming very obvious to me. And yes, she too had the frequency, urgency, pain, etc. - everything you described. Finally a doctor suspected that she might have IC and sent us to a urologist who conducted a cystoscopy and confirmed the IC diagnosis. That day will forever stay in my mind because the doctor handed me two pieces of paper - one with an IC diet information sheet and the other the icnetwork website where I could learn more about what IC was. My daughter sat there with a huge smile on her face and she told me out loud, finally someone believes me and there is a name to it!

Flash forward to now and here she is 24 years old and still fighting the battle. First I would suggest you go see a urologist and ask to have the test done. If the doctor you have been seeing is not connecting the dots because of your age go see another one! I can't tell you how many doctors we visited who assumed my daughter was too young to have IC and then did nothing.

Next, have a meeting with your high school counselor about your condition. My daughter had been missing so much school her senior year that they almost kicked her out. I met with the school and explained the situation. They were completely understanding and allowed me to keep her on schedule with her homework when she was not able to go to school. I made sure I communicated with the teachers about assignments so that my daughter would not get behind on the days she could not make it in. With cooperation and communication my daughter was able to graduate.

I have to admit that when I first did my research on the icnetwork I cried and cried wondering which story would be my daughter's story. You will notice that there are many situations and the condition varies from patient to patient. Take in the ifnormation and try to learn as much as you can. Try the different diets, works with your doctor on a medication plan and be aware that it will be a trial and error process. Not everyone responds to medication in the same way.

There so much more I could say but just know there are plenty of wonderful people willing to hold your hand through this process and help anyway they can. You've taken the first step by logging on this network.

Good luck and feel free to let me know if you or your mom needs help.

[ninatorres]

@Deliamh thank you so much for answering :) my mom has her own issues now also and i can see how she can get confused with my symptoms being this and that. this morning though i told her that last night was worse that i may have gotten a cold etc, but she said nothing to me :D she's probably distracted, because she has so much going on herself. yeah, all i want, is a diagnosis, i would be so happy..I will try to suggest IC to my doctor next time and ask for more tests (cystoscopy), though last time he said, that when one month has passed and i haven't gotten better, he would prescribe the same medication only bigger doses, then after the second month, it would be seen, if this medication works or not. so i don't know if to tell him immediately or to wait for another month, cause right now i really can't tell if those pills i take now help. one day i feel like they do, the other day not. I started my diet on monday though i'm afraid that maybe i won't be able to tell later, if the diet or the medication has worked. Thank you again for responding :)

[hannahw]

Nina-

I know exactly what you are going through! I started having the symptoms of IC when I was 18, and wasn't 'officially' diagnosed until I was 19. I went from doctor to doctor doing urine tests every other day it seemed, being told that I had a UTI, and then wondering why the antibiotics didn't work, to being told that I had kidney stones (which I didn't)!
If I were you, I would try to see if there is a doctor in your area that specializes in IC, or even urogynecology. It took me 6 months to finally get referred to a specialist in IC, and then it took 3 months for me to be able to make an appointment. I know how frustrating it is waiting to know if you do or do not have IC, but there are a few things that you can do in the meantime.
I would start doing the diet, regardless if it means you wont know if its the pills or the diet that is helping, because wouldn't you rather be feeling better? I know it's tough, but I've been on the diet for a few months now, and I rarely miss any of the foods that I shouldn't be eating. It'll get easier.
With regards to your mum, I know its difficult, especially if she is dealing with her own issues to. My mum is clinically depressed, has 2 chronically ill daughters (including myself), and I know how upsetting it can be when it seems like she doesn't care, or doesn't believe that you're in pain.
I've had IC for a year and a half now, and some days I feel better, and some days are worse, but I am by no means feeling 100% all of the time. And when I'm feeling really bad, it sometimes feels like my mum ignores me. It's because seeing her daughter going through this is difficult, and its even more difficult because she can't do anything to help. Know that your mum cares about you, and wants you to feel better. It's difficult for both of you, especially when you don't have a diagnosis, which can proclaim that you aren't making it up!
That was the best part of being diagnosed for me, being able to prove to everyone that I wasn't making it up!

Sorry for the long post. I just wanted to let you know that I completely know what you are going through, and it will get better. I hope you find a doctor that is willing to perform the tests to diagnose you, so that you can move on to the next step, which is to start feeling better!

Best of luck,
Hannah

[ICNDonna]

My suggestion is to start the diet right now. It may be that it will help you more than anything else you can do.

Sending healing thoughts,
Donna

[ninatorres]

@hannahw thank you for your reply! :) yeah, getting a proper diagnosis would mean everything to me..sometimes i feel i myself even doubt myself when i see people around not really getting it..the anxiety that comes with IC is also not fun..but having my next appointment to uro on tuesday and hoping for the best! oh and i like your blog! i looove ice-cream and have all other cravings too :)

[ninatorres]

@ICNDonna thank you for your suggestion, will try my best to get the diet thing going :)