Before a diagnosis of IC


#1

I am very frustrated right now because I am incessantly being told that I am a “recurrent UTI” sufferer, when I know in my head and in my heart that I have IC and simply have yet to be put through the torture of all of the diagnostic tools used to give me a formal diagnosis of IC.
Right now I am experiencing urgency but fighting the urge to urinate because I know it’s a false alarm, and I am having urethral spasms that are sharp and cause wincing pain at times. I am drinking a bottle of water but am afraid to drink it too quickly due to fear that I will have to urinate upwards of 10 times if I do. I need support and to reach out to others who are going through the same thing I am going through…constantly being told by doctors and family members that “you’re healthy” simply because they can’t see the inside of your bladder nor feel the pain and frustration that you are experiencing. Help!


#2

That is what they thought I had, even starting taking a low dose antibiotic
to prevent UTI

I found drinking lots of water actually helped
Reduce or eliminate caffeine & alcohol
I eliminated OJ, cranberry juice, tomato juice

Do any of the medications help??
Can you get a referral to a Urologist they can make a difference

erica
----- Original Message -----
From: “Beth83” interstitial-cystitis-cpt4368@lists.careplace.com
To: werica@sonic.net
Sent: Thursday, June 14, 2007 7:14 PM
Subject: [interstitial-cystitis] Before a diagnosis of IC


#3

Hi there,

I understand you frustration since I had to go to 8 different Drs’ to find out what I was experiencing. I was going to the bathroom almost 50 times a day and two to three times a night. Believe me after going so often my bladder was raw and the pain was unbearable. I finally found a good “Urogynecologist” in my area and he told me I had I.C. the first visit. All the Urologists I had gone to had not idea what I.C. was and just gave me Detrol which made my mouth dry as a piece of cotton. Did nothing for the frequency of pain. There IS a difference between an overactive bladder and I.C. but they would not admit they had no clue what my problem was. I had awful pelvic pain also and finally went to the ER one night and demanded a CT scan because I thought I had bladder cancer at that point. My new Dr. put me on Elavil and Atarax for the muscle spasms plus Elmiron to hellp heal the bladder wall. Hope it works. I have to be very careful about what I eat . Any citrus or tomato products start a really bad flare on me. I finally got the Interstim inplant and this has taken away the pelvic pain and frequency. I now go about 8 times a day and finally sleep throught the night for 7 hours.
Hang in there and see if you can call around and find a good Urogynecologist that has knowledge of I.C. I just hated it when they just tell you its a vaginal infection and give you meds for that, which does nothing if you have I.C.
Take care and I hope you find a good Dr. Sometimes you have to be pushy in order to get the correct treatment. I know since my son is a Dr. and he tells me stories you would not believe!!
Rose


#4

what is the interstem inplant and how does it work?

carezeb interstitial-cystitis-cpt4368@lists.careplace.com wrote:


#5

if youre not supposed to drink cranberry juice is i bad to take cranberry supplements, i have been taking them to try to help out my urinary tract health but ive been told i sound like i have ic.