Diagnosis before IC?

[annabel]

Just wondering how many of you have had different diagnosis' before being told you have IC? In the past year i have been told that I have/may have -chlamidya, ovarian cysts, fibroids in my womb, pelvic inflammatory disease, kidney infections, chrones disease or ulceritive colitis, IBS, cancer in the bladder.... the list is endless. Made me feel so alone because when I would tell my friends what I may have, they eventually started getting annoyed because there seemed to be a new condition daily!! I'm so glad that it's none of those things and I can finally treat the IC. But it's been a really long journey.

Can anyone share any similar stories?

[Mrs. Peel]

Sure can!

My first severe IC symptoms started this March. I was already very sick with what my GP thought was pancreatitis when I came down with the exact symptoms of passing a kidney stone. The tests for pancreatitis came back OK, so he gave me Nexium. I was spending most of my time in bed, and my husband was working both his and my shifts at our store.

I started feeling really sick all over, so I went to an urgent care clinic, where they agreed it was probably a kidney stone, prescribed 8000 mg of Ibuprofen daily, and sent me for a CT scan. The scan showed no stones or urinary abnormalities, nor did it show any gallbladder problems. It did show a dermoid cyst on one of my ovaries.

The next day I felt so bad, I went to the ER. I was running a low fever even though I was saturated with Ibuprofen. I brought the CT results with me. The doctor took blood and urine which came back mostly normal, except the lab requested another urine sample because there were epithelial cells in the first one(gee I wonder why?). The doctor told me it was because I didn't do a clean catch! as if I don't know by now how to provide a urine sample.

Anyway, he said it was probably the ovarian cyst and sent me home with Tylenol 3.

I went to my GP the next day. He believed I was in real pain, though he couldn't put a finger on it. He didn't suspect the cyst. And there was the fever. He gave me a really strong antibiotic. That made me well enough to get out of bed and work some, but the flank pain was still there, and the nausea from the GI thing.

When the antibiotic didn't kill the flank pain, he decided to send me to a Uro. I also decided to see the Gastroenterologist who'd treated me for something else years before.

So, a very painful uro exam, another urinalysis with culture and cytology, an EGD (upper digestive scope), a sonogram, and a cystoscopy with hydrodistention later, I found out that I had IC, and that the mild spastic IBS I've had for years has worked its way up to my bile ducts and stomach.

Seven weeks for the IC diagnosis. The IBS, three months. It was probably brought on by the stress of a family crisis we were having. I suspect that more than half the people here had it tougher than me.

So I'm not complaining ;-)

[VickiB]

Yes, I had many years of varying diagnoses. My guess is the docs I saw were not familiar with IC. I think they like to tell a person 'something' rather than scratch their heads and say they haven't a clue.

In the beginning I remember feeling so hopeful that my pain would now be resolved, only to have those hopes dashed. Eventually I took a 'maybe/maybe not' attitude with whatever they diagnosed. Very frustrating!

Vicki

[annabel]

Wow Mrs Peel- sounds like it's been a journey for you too! Consider yourself lucky it took you 7 weeks to get a diagnosis - it took me over 8 months and thousands of tests and other diagnosis. Glad you got there in the end :)

VickyB - I read about IC on the internet and mentioned it to my GP, assuming she wouldn't know much about what it was and it's symptoms, so that's why she'd not mentioned it before. Her reply was "Yes of course you have symptoms of IC, lets refer you to a urologist shall we?" If she had done that 9 months ago I wouldn't have gone through all I did this year! Sometimes doctors are funny...

[aleet7]

I've had years of being diagnosed with PID(Pelvic Inflammatory Disease). I've never had a positive test or culture and all they could come up with was PID! It was so very frustrating!!! When I finally had my cysto/hydro I was brought to tears to find out I had IC! The tears were a sigh of relief because I was so tired of not knowing what was wrong with me.

Best Wishes,
Aleet7

[gatorgal]

The first three urologist I saw diagnosed me with over active bladder. I kept telling them the anti-cholinergics where helping with my frequency but not my unrelenting pain. One urologist patted me on the head and told me I was a young healthy girl. One did a office cystoscopy, which was torture.

[Mrs. Peel]

I know I was lucky. So lucky the the first Urologist I went to was an IC advocate. I had only one doctor (E.R.) who pooh pooh'd me. I wonder how it is that so many urologists and gynecologists don't know that IC exists, and that some probably just don't believe it's real?

Does the AMA or CDC send out mailings to combat this ignorance?

[maryla]

Annabel,

For probably 30 yrs I was d'x with chronic cystitis, OAB, bladder infections even though they never found bacteria, but blood in my urine, so here's some antibiotics. Then about 5 yrs ago, the pain, frequency, urgency sped up and my gyn at the time d'x me with IC and sent me to a uro.

I sometimes wonder if maybe something would have been done way back when, if my bladder would not have gotten to the state that it is in now, because my IC did progress, But who knows?

Hugs and blessings

[c2miracle]

Hmmmm, the diagnosis :confused: Well a list of auto-immune diseases and also "that I'm crazy" and I need to see a psychologist. I was crying when I finally had a diagnoses because then second guessing myself was no longer an option. This went on for years as I can now think back and analyze everything that I have gone thru with hospital stays and surgeries. Unfortunately I have the diagnosis of IC but I still have other issues that remain to be diagnosed :confused: Think Positive :)

[klite]

Hi Annabel,

It took me a looong time to get the correct diagnosis as well -- maybe 2-3 years? I got really sick three years ago and after that, I had lots of problems with abdominal and pelvic pain.

I was diagnosed first with IBS (which I do have) and then with ovarian cysts (ditto) about two years ago. I didn't find out about the IC until two weeks ago, after suffering for 6 months + with recurring "UTIs" (like 2 - 3 a month!) Finally a doctor noticed that I never had any bacteria in my urine cultures and that's what led us to suspect IC.

BUT I still didn't receive the correct diagnosis after my first uro visit -- he told me I had over active bladder. And, like scrambles' experience, the in-office cystoscopy was so awful (I cringe just thinking about it). It wasn't until I saw someone else that I finally got the right diagnosis.

I've had many, many blood, urine, and stool samples taken over the three years, as well as many, many ultra sounds (pelvic, kidney, and bladder). I was told A LOT that it was "just stress" (I'm a graduate student).

Now that I know it's IC, I've changed my diet, am seeing a naturpathic doctor, and I'm already noticing a substantial decrease in pain and frequency. I still have a way to go, but it's a relief to know that I'm finally tackling the right problem!

Good luck on your own journey.