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XkaraX
08-29-2004, 07:30 AM
Hi, my name is kara, i'm 24 years old.

I have had IC pretty much my whole life. (the only thing where i can even think i got it from was when i was 2 i had cellulitis throughout the tissues in my whole body) although i wasn't diagnosed until i had a cystoscopy with hydrodistention this past january...which made my symptoms 5 million times worse than they already were.

i would have very random flare ups in my teenage years but had no idea what they were and never brought them up to anyone. the couple of times i complained to the doctors about my symptoms, i was diagnosed with a gastric ulcer and ovarian cysts.

everytime i would give a urine sample they would always tell me i had white blood cells in my urine but since i didn't have any uti symptoms to just keep an eye on it. last july they started putting me on antibiotics for them, so i was medicated to death. i had an emergency abdominal CAT scan and they told me i just had more ovarian cysts that had popped. so i went on birth control pills and it actually helped a lot with the symptoms. i went to the gyno where they told me i had a PID and gave me more antibiotics. the uti symptoms with come back every couple of weeks, until finally my doctor had me make an appointment with a urologist. who i saw and who gave me more antibiotics, 2 days later i called again and saw him right away, he told me i most likely have a condition called interstitial cystitis and prescribed me elavin and an antihistamine. both made me EXTREMELY tired and i had a very difficult time fuctioning since i felt like i was in la-la land for the 2 months i took them. i had my cystoscopy with hydrodistention and the extreme pain after the procedure never went away, when supposedly it's supposed to after a few weeks? i was then put on elmiron and have been on it for a lil over 6 months and am doing great on it. i take 2 pills in the morning and 2 at nite. i still have an occasional flare that is usually related to my period, but it is better than living every day in a flare like i used to.

also the first month i was on elmiron i got instillations with some sort of a cocktail. they really helped a lot, it was great not to be able to "feel" my bladder for a few hours after i would get it done!

i currently don't have health insurance which sucks, i have a month left of my elmiron so i am hoping my application for the patient assistance program goes through by then!

no one in my family knows i have IC because i don't want them feeling sorry for me...plus my mother has a tendency of being a hypochondriac and thinking she has everything everyone else does...which is pretty annoying if you have chronic pain and are trying to live a normal life. :rolleyes:

xoxox

SunDaze83
08-29-2004, 08:41 AM
:welcome:

Sarojini
08-29-2004, 08:51 AM
:welcome: to the ICN!! I'm glad you found us :) I'm sorry you've been through so much... and I'm sorry you feel you can't confide in your family about your health problems.

You'll find a lot of support here!

SharonA
08-29-2004, 09:13 AM
:hi: :welcome: You have found a safe place to come to with questions, thoughts, vents, etc...where everyone understands what you are going through because they are or have been in your place. There are a bunch of really great people here who will offer you support, soft shoulders and understanding. Glad you found us. :)

kelly McC
08-29-2004, 12:40 PM
HI and welcome.
Glad you found us.. Here is a link to the handbook http://www.ic-network.com/handbook/ it has alot of information. here is a link to the drug assistance http://www.ic-network.com/drugassistance/ .
huggs,
Kelly

sleepyangel30
08-29-2004, 12:53 PM
:angel: :welcome: :welcome: :welcome: :angel:

JAMIEL
08-29-2004, 02:12 PM
Welcome Kara!

It sounds like you have had a rough time and I am sorry for that! I know how difficult it is to try and get family members to understand what you are going through but you need all the support you can get! Maybe in time you will be able to educate everyone in your life about IC so that they can be be supportive. There is a lot of great information of this website! I am your neighbor here in New Jersey!!! My IC doctor is in Long Island (New Hyde Park) and he actually wrote a book "The Interstitial Cystitis Survival Guide" which is an excellent resource for you and your family. I am glad that you seem to be feeling better. I have my bad days and worse days but I have to believe things will get better!

Lots of Hugs!

Jamie

XkaraX
08-29-2004, 05:59 PM
wow! everyone here is so nice, thank you so much for the welcomes!! i look forward to being a part of these forums :)

xoxox

sweettabby
08-29-2004, 10:34 PM
Hello to you and hello to me too. I posted awhile back but havent posted in a long time. I do come here all the time. Glad to finally be able to post again.

Katrina
08-30-2004, 02:00 PM
:welcome: :welcome: Welcome to the ICN!
I am so sorry you have gone through so much. I am happy you found us...hopefully now we can help you get the relief you need. Feel free to come back to us if we can help you anymore.

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

~*~Christine~*~
08-30-2004, 10:37 PM
Just saying "Hi" and "Welcome" and giving hugs : )