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Interstitial Cystitis Support Group
A community of patients, family members and friends dedicated to dealing with Interstitial Cystitis, together.
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IC ForumsGeneral & SupportIC Newbie
03/13/2012 07:03 AM
sjofrown
 
Posts: 31
Member

Hi All, I was just diagnosed with IC after years of uti's and antibiotics. I was referred to a Uro after my urinalysis revealed hematuria. He did a cystoscopy and IVP of the kidneys. I'm retaining urine in my bladder even after voiding with horrible pain. Urine is revealing red and white cells. Doc is recommending Elmiron for IC and Lexapro for depression and anxiety. Im voiding 16-24 xs a day and it's changed my life drastically. I'm a train-wreck right now and it's so frustrating because I also have Sjogrens, CF, Fibro and PCOS. I just wanted to join others who understood. Thanks for listening.

IC therefore I P

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03/13/2012 07:56 AM  Top
blondee8257
blondee8257  
Posts: 1122
Group Leader
I'm an Advocate

welcome sjofrown, really glad to have u but sorry to hear of ur diagnosis! just make urself at home n if u need any help or have questions do not hesitate to ask away, we r all in this together n i know the same meds, diet, etc doesnt help each n everyone of us but maybe together we can help. sometimes just talking about it helps alot...lord knows i sound off enough. glad to hear u r starting the elmiron...ic also changed my life..had a triple dose w/ic, fibro, n arthritis...all diagnosed at the same time. we just have to take one day at a time n hope for the best for the next.

many tender hugs,

blondeeKissing

Post edited by: blondee8257, at: 03/13/2012 07:57 AM

many hugs,
blondee

'To get something you never had, you have to do something you never did.' When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something better. 'The will of God will never take you where the Grace of God will not protect you.'

I am not a doctor, nurse, nurse practitioner or anyone in the medical field. i can only share my experiences dealing w/my pain!

Previous discussions I participated in:
i just had to share this...
thnkful
sunny day

03/13/2012 03:03 PM  Top
sjofrown
 
Posts: 31
Member

Thanks for the welcome blondee. I'm trying to get my mind and thoughts together. I have major brain fog. Ugh!

I wanted to find out about filing for ssdi because I can't work with all of these ailments and I need to take care of my children. It's so scary when you have no healthcare. What condition was your ssdi disability approval based on? I need all the help that I can get. Thanks any help!


03/13/2012 05:33 PM  Top
blondee8257
blondee8257  
Posts: 1122
Group Leader
I'm an Advocate

my ic story is a lil different...i had a cystocele (sp)about 5 yrs ago so dr done a hyster n bladder tack ,didnt know at the time i had ic...after many many problems and a diganosis of ic 3 yrs later i had another cystocele n they had to do the mesh support sugery. i had no pelvis floor muscles after first surgery so the next one was even worse..tried to build pfm up w/therapy but u can only do so much. see i cant get up in the mornings n say im going to do this this n this...cant be on my feet all day, have to get off of feet n have plenty of rest or i get the feeling everything is falling out again. so i cant sit at a desk cause bladder has a flare, cant be on feet all day, cant lift anything over 5 pds, have to have lots of me time in bed or recliner. so it was a combo of ic, fibro, pfd n arthritis in hands, back, neck, n knees/feet. lol..im a total mess! had some very good drs that spelled out my prognosis n my future prognosis. it has changed my life but im lucky..all children grown n i have help doing daily chores...lots of things i cant do...even bending n stooping is a no no. i have my mom that goes to the grocery store w/me to lift heavy things n my husband is always around to carry things in. it took almost 2 yrs for me to go thru the process then have a hearing. best of luck w ur disability!
many hugs,
blondee

'To get something you never had, you have to do something you never did.' When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something better. 'The will of God will never take you where the Grace of God will not protect you.'

I am not a doctor, nurse, nurse practitioner or anyone in the medical field. i can only share my experiences dealing w/my pain!

Previous discussions I participated in:
i just had to share this...
thnkful
sunny day

03/14/2012 07:00 PM  Top
sjofrown
 
Posts: 31
Member

Wow, that's a lot! I have to google cystocele. Ive heard of it before. I also have degeneration of my cervical spine and my back kills me. I'm 43 yrs old and feel like I'm 70! It's horrible to be in pain and not be able to just function. Thanks for your help
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