View Full Version : Newly Diagnosed
09-13-2004, 12:41 AM
Hey, I'm Sasha....well I dont know wiether to be happy that I finaly know whats wrong or to be even more mad.... I'm 17 years old and I've had IC since I was at least 4.... I finaly found out about 3 weeks ago thanks to my OBGYN. They put me on 3 ELMIRON a day for 3 months to see if it helps... so far no luck. Im home from school ONCE again today, I do beleive that my absence total so far is 12 in the 3 or 4 weeks we have been in school... The school is talking about putting me in a home bound program... which is just peachy because it is my senior year and i get to spend it at home :dizzy: Not to mention that i have had a horrible UTI for about 2 weeks before i even realized that i had one... Not to mention strep which i got and was out of school for... Lets just say that this month isnt going well... I do beleive that this morning has been the worst so far, or so it seems, I woke up at 3am ( after going to bed at 12) with bladder/stomach pain and i thought i was dying, which i wish i was.... Well thats my story so far....
09-13-2004, 01:16 AM
Oh, Sasha, I'm so sorry -- what rotten luck to have all this happening during your senior year of high school, huh? I'm so sorry :grouphug: You sure have been going through a lot so far this year. :grouphug:
Anyway, :welcome: to the ICN, and I'm so glad you found us. Now that you know what's wrong, you can start exploring what treatments are right for you. Check out the Patient Handbook at http://www.ic-network.com/handbook for lots of information on treatments and self-help tips if you haven't already.
As for the Elmiron, keep in mind that it can take 6-12 months to really work in some people, so it's kind of a long-term commitment -- perhaps talk to your doctor about other treatments you could be trying in the interim for symptom relief while you're waiting for the Elmiron to kick in. I know I didn't notice any difference until I'd been on it for 6 months -- so far it has reduced my urinary urgency but that's it. Also, some doctors are now putting people on higher doses of the stuff. I started out on 300 mg a day (1 capsule 3x a day), but my new urologist has me on 600 mg per day (3 capsules 2x a day).
Also, just wanted to let you know that I'm like you... I am 30 years old now, and was officially diagnosed last March, but I can remember having IC-like symptoms when I was as young as 8 years old! It's tough to have the symptoms as a kid because all they do is is test your urine, see it's negative for bacteria, and send you home telling your parents that either your bladder is small, that you're stressed, or that you just have to learn to hold it better!! :mad:
Anyhoo... keep posting... you'll get a lot of support here. And if you want you can PM me anytime you want and we can chat. :)
Take care!!! :grouphug:
09-13-2004, 01:17 AM
I'm Laura. I was just diagnosed last thursday. I have been trying to find out for many years what is wrong. I felt bad that I was happy someone found something wrong and its not all in my head. Many doc's over the years have made me feel I was crazy. ER visits, appendectomy, multiple UTI's(not even just IC), and Irritable bowel... I hope you feel better so you can enjoy your senior year. I look at it this way, Things could always be worse. at least they have figured out what is wrong with us. Keep your head up kiddo!! try a heating pad that sometimes helps me. good luck
I was just around your age when I was diagnosed. IC is tough with school at times but you can make it through it. I am putting a link here to the Handbook, http://www.ic-network.com/handbook/. In there you will find a section on diet. Sometimes by just watching what we eat and drink that can help with symptoms a lot.
Like Jen said there are a lot of different treatments you can try. You can read about them in the handbook too. The main thing is to try to keep your chin up and keep trying to find that right treatment.
I am 46 now, after I graduated from high school, I went on and graduated nursing school, and worked for awhile as a nurse. I am married, have children and a good life. The reason I mention this is that I want you to know there is life with IC. Most of the time I feel good.
Hang in there and I do hope you can find some help, enjoy your last year in high school! :)
09-13-2004, 05:15 AM
I'm sorry you feel so yucky. The good news is that most people find a treatment plan that works for the doc and yourself. I have been nurse for over 11 years and am taking a self imposed hiatus to spend extra time with my little girl. and let my take rest. I worked for 11 years full time, and by golly this is my time. I am still having considerable problems with bleeding, spasms and pain but take things one day at a time.
09-14-2004, 01:42 AM
Thanks guys... it helps to have some support
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