how long did it take for you to be diagnosed?

[april ryan]

I had frequency since I was a child, but from the onset of the pain it took about 5 months. I start to think that I've been lucky, even if those 5 months were orrible..

How terrible is the experience to feel bad and do not know what on earth is wrong with you!?

[ICNDonna]

I have to agree that my worst time with IC was before I was diagnosed. Once I knew what I have I was able to deal with it.

Donna

[kadi]

•3 months from onset to hydrodistension. (I had very rapid onset IC, very ill all of a sudden, voiding 60x a day, )

•1 hour after hydro: diagnosis told to me by recovery room nurse when I was coming out of anesthesia & I asked her if I had IC.

•2 months later by my doctor: he told my family at the hydro that it "might be IC" or it "might be a transient irritation" & if just irritation, I'd be fine in 2 months.
(This was not helpful as I did have IC & my family did not want to accept that & got angry with me when I wasn't better 2 months later. It was really strange because he'd marked my insurance papers with IC for the hydrodistension & all treatment following it. And each subsequent doctor who saw the photos from the cysto/hydro said,"yes, that's IC".)

[leelee88]

Well, I had had symptoms of IC since childhood.. Never seen a URO..So never knew I had anything wrong..

But as an adult at age 36 on July 06 I had a the worst bad bladder infection I had ever remember having. Think I have only had 2 before that one. I got over the infection with strong antibiotics, but symptoms did not go away.Then was Diagnosed with Kidney stones a month later had them removed.. But pain still persisted So that is when the URO mention possible IC .. Had cysto/hydo on Nov2 06 and IC was confirmed!!! :(

[Sarojini]

I remember episodes of frequency and urgency as early as age 8 or 9. I remember car rides could be horrible during this time, and I remember skiing with my parents and needing to use the bathroom after every single run down the mountain!

I do know my parents took me to our family doctor once and he said that my bladder probably was just a little small and that it would catch up to the rest of me shortly.

And at that age, episodes of what I now suspect was early IC were very transient and I'd have months, even years, where I was fine... and there was not much pain during those early "flares." (Although I do remember occasional urinations that would burn.) SO, I never really pursued the problem - guess I really didn't think it was a problem :)

But in 2003, my frequency and urgency got progressively worse - at first I didn't notice much and chalked it up to drinking a lot of water if I did. Then, all of a sudden it became unbearable around Christmas - needing the bathroom every 10 minutes, absolutely excruciating pain of all kinds. After the holidays I went to the doctor - that doctor didn't do much, but then my husband found another urologist in early March 2004. I saw him on a Monday, and on Thursday I was in the OR having a hydro.

So... I guess I was diagnosed about three and a half months from when my symptoms went crazy and I became desperate for answers.

I agree with everyone who says the time before diagnosis is the absolute worst - you don't really know what's the matter, neither does anyone else -even doctors, family and friends just don't get how bad you feel, you wonder if it's something that's going to kill you... ugh. :mad: It sure was a relief to get a real diagnosis.

:grouphug:

[vm]

My symptoms started in March of 2001 - 1 month after my second c-section. I began seeing my urologist in April and I had a diagnosis in September of 2001.

[SharonA]

This is what I have entered into my IC Time Line:

August 3, 2001 - Had UT trouble
August 4, 2001 - Had UT trouble
August 5, 2001 - To Minor Walk in Clinic - UT trouble
August 6, 2001 - Not feeling well - Bladder Spasms
August 7, 2001 - Appointment with PCP - re: bladder
August 10, 2001 - 1st appointment with Urologist - Began taking Ditropan
August 14, 2001 - Appointment with Urologist
August 15, 2001 - Began taking Detrol - Stopped Ditropan
August 20, 2001 - Appointment with urologist - Hubby went with me - Doctor
recommended Cystoscopy
August 22, 2001 - Pelvic Ultrasound at hospital
August 23, 2001 - Urologist did Cystoscopy/Hydrodistention
August 31, 2001 - Appointment with Urologist - IC confirmed

My symptoms began out of the blue on a day that I was under extreme stress due to family issues. I consider myself very fortunate that I was diagnosed so quickly.

I forgot to mention that I stopped taking the Ditropan and Detrol because of retention.

[april ryan]

Sharon,

This looks like a record!

[dg2901]

Sudden onset of symptoms February 2003.
Dx spring of 2006

[snowgirl]

Childhood problems at age 5 - first cysto.
Five years to get diagnosed. Officially diagnosed at age 25 I am now 47 and yes for me IC was progressive. VN

[Briza]

No bladder problems at all til Nov 2003 (I was 35 at the time)...many many many drs later was dxd Nov 2004. SO it was a year from onset of symptoms til I got a diagnosis...but was so traumatized from the whole "it's all in your head," poking, prodding, biopsies, surgeries during that year before dx that after dx I didn't see another dr for an entire year to get regular treatment for my IC and VV.
The hydro that "dxd" me just about killed me and I suppose that was the last straw. I guess I was in medical system overkill and needed a break. Well, I'm still here and much better now as far as the IC and VV goes, after finding the right dr and fine tuning my diet and meds.
But absolutely, whether it is a couple months, six months, a year, or years, the dx part is by far the most stressful part of IC for many of us.
Strange to say, but I'd rather have IC and VV the rest of my life than go thru what I went thru that first year. Definitely there is something to say for going at it aggressively and not stopping til you get a diagnosis (which is what I did), but it consumed my life to the point of driving me to the brink...I just wish some dr along the way had given me something for my pain and something to help me sleep so that I could have continued with my life at somewhat normal pace while I was searching for diagnosis.

[hdwadman]

I think that I actually manifested the first IC symptoms about a year before I was diagnosed. I was told that I had epidimytis, a prostate infection, etc. It was actually an ER dr who asked me if I had been checked for IC by the uros I had seen. I went back to the uro I had been seeing, and he got mad and yelled and cursed at my wife when she asked if the symptoms fit IC. I found a different uro, and he was very doubtful that I had IC, but after several negative tests to rule everything else out, he did the KCl sensitivity test and cysto, and found that I do indeed have IC. I am so thankful for the dr in the ER who had seen IC in men before and recognized the symptoms. I believe without him I would still be running around trying to figure out what the problem is.
DeWayne

[april ryan]

Dewayne,

It looks like you were lucky. For us women it's a long process to get diagnosed, but for men it's probably a nightmare!

Also that urologist that yelled at you, should be in jail!

Have a nice day,

[mary124]

I have had symptoms on and off since I was 17 but like most of us, some times it was an "actual" UTI and sometimes it wasn't. It wasn't till my second son was born 10 years later - (I was 27) that we started to look into what was going on. The few Urologist that i was sent to never heard of IC and so after over 5 years of testing, and a few doctors, my URo went to another doctor who specialized in IC and mentioned that I might have it- but he told us that I was too young (i was 32; this was 1992 and was dx with a hydro) and all of his patients that have it was in their 60-70's. (now I look at this board here and see all of the young people who have it.

[BT2008]

I had a frequency problem for the past 4-5 years--going about every 20-45 minutes during the day, and getting up, on average, twice per night. But it never occurred to me to ask my doctor about this; I just assumed that this was the way my menopausal body was processing fluids.

After suddenly being hit with severe pelvic pain on June 14, 2008, it would be three--very long months--before I was definitely diagnosed with IC.

With that said, however, after reading some of the stories on this forum, I know that I am VERY blessed that it was only three months--and not three years--or five years! I cannot even imagine ...

As a side note:
I must say that I have the greatest respect for every single person who suffers from IC! Each one of us are totally amazing women and men to be able to continue to survive with all that goes along with IC. It is truly devastating to live with...and all of you are my heroines/heroes!!

:grouphug:
~Beth