How many cystos?

[amethyst79]

I've read in numerous places that some ICers require 3-5 cystoscopies before they receive an IC diagnosis. So I'm wondering... have any of you had multiple cystos before the dx? My first came out "normal" but I'm still 99.9999% sure that I have it.

Hugs - Chelle

[Kiyoka]

I had only one and I found out I have ic.. I only had problems for less then a year before I out what about ic..I didn't know it was. Good luck

[Dixiefireball]

i also had one and have it my best friend has very mild ic and they found it on her first one too. she doesnt post much here because most of the time she has a normal life. she was lucky they caught her's when i told her she had some systom like i have and got her on her medicine right after the surgery was done and they told her her's was so mild she would only most likely have to take her medicine for 6 mths to a year and take 6-8 dmso.
boy i wish i had been that lucky.
sending hugs and prayers
Rhonda

[blue]

I had one, but they found a tumor in my bladder as well. They removed the tumor at the time.

About a month later, they perfomed another test. I've forgotten what it's called. They used a catheter, and put some solution in my bladder, drained it, then put another. After it was all over, they put lidocain for the pain.

After all of that, I was diagnosed. He felt pretty sure I had IC from the beginning, but had to run the test to be sure.

[amethyst79]

Blue, how scary to find a tumor. When I first started showing symptoms my PCP was almost sure bladder cancer was an option due to urinary frequency, urgency, and hematuria being the primary three symptoms. Then the uro suggests IC, and the cysto was clear. I can't imagine what my mind frame would have been like if a tumor was found!

Right now I feel like I am crazy... When the uro suggested IC and I did the research, I said "WOW this sounds EXACTLY like me!" I became determined that I have IC, though not an easy thing to want to accept. But now that the first cysto came out clear, I keep thinking I must be crazy... what else could it be? We've excluded so many options already...

My main symptoms are the frequency (43-65 times a day on average), urgency, I have the microscopic hematuria, bladder area pain - well pain in most the pelvic area, ovarian area pain, flank pain... I can't tolerate most of the forbidden foods on the IC diet (esp. tomatoes). Usually sex is a nightmare I'd rather avoid, but I found pain pills first and being half asleep works lol...

I am just SO confused!

Chelle

P.S. All this started when I thought I had a UTI... all cultures have come back normal except for the hematuria... grrrr

[MelanieJ]

Chelle,
Please read my patient story by following the link in my signature below. I wasn't diagnosed by hydro either! Not all IC patients have the ulcers and such....there are two forms of IC - ulcerative and non-ulcerative. Sounds like you probably have the latter, like myself.

Keep pushing for answers and help! And if you feel like your doctor isn't listening to you, get a second opinion.

Good luck!
Melanie J.

[amethyst79]

Melanie, great read and picture!! I have been contemplating the Potassium Sensativity Test, but hearing some talk about the pain of it... :yikes: A lot of the beginning of your story definately sounds like me...

I am also looking for a 2nd opinion, but after my next set of tests... more urine cultures on Monday, Gyno on Wednesday, and a CT Scan on the 6th. I figure get these done so I have more to bring to a 2nd uro. Luckilly, the one I have now gave me Lortab for the pain, doesn't work great, but at least makes me fall asleep so I'm not suffering.

Thanks a million!

:kiss:

Chelle

[ICNDonna]

When you say cysto, do you mean the procedure done in the hospital with a hydrodistention? If the cysto was done in the doctor's office, that does not usually diagnose IC. When I was being diagnosed, my bladder appeared completely normal and healthy during the office cysto. It was only when it was distended (stretched) under anesthesia in a hospital operating room that the IC was visible.

I hope you get some answers soon. I know for me the time before diagnosis was the very worst.

Warm hugs,
Donna

[amethyst79]

Hi Donna,

The only cysto I had was the cystoscopy/hydrodistention in the hospital, under anesthesia. I was simply told "it looked normal." To my knowledge, from what I was told, so normal he didn't even do a biopsy.

Yes, this pre-dx time is awful, but you gaves have reduced more anxiety than you can possibly know!

Hugs

Chelle

[kelly McC]

I also had 1 cysto done and was diagnosed. I will keep you in my prayers and hope you get some answers soon.:pray:
Kelly

[MelanieJ]

Chelle,
I found the potassium test much, much less traumatic than the hydrodistention. Unfortunuately, with IC, we can all react differently to the various tests, medications, etc that our doctors throw at us. Not only did I get my diagnosis, I didn't flare up from the test afterwards and they instilled some kind of lidocaine agent into my bladder afterwards....so I have many hours that day of no pain at all. It took a couple of weeks for me to recover from the hydro and the first few times peeing was excruciating!

Anyway, sorry for the rant. I hope you get some answers soon. I know how frustrating it can be when you know you have IC but the doctors can't figure it out yet! Maybe you could start on some IC treatment therapies anyway to get some relief. Maybe ask your doctor...

Let us know how things go for you!
Melanie J.

[blue]

I was scared for awhile that it was cancer. So, IC was kind of a relief! I was still so overwhelmed!

[dyno]

I was diagnosed with 1 csyto/hydro at the hospital. Donna asked the same question I was going to, if you had the hydro also or if this was just an office cysto?

[amethyst79]

It was a hospital one.

Blue, glad you were able to be relieved by an IC diagnosis... weird to think of IC as relieving!

Hugs

Chelle

[Sarojini]

I was diagnosed after just one cysto/hydro as well. My uro went out and told my husband he was certain I was serious when I said it felt like I had to pee every second of every day, because my bladder was small and full of little hemmorhages and inflammation.

However, I read in The Interstitial Cystitis Survival Guide that some patients' bladders look normal even under distention, yet they still have IC symptoms and will benefit from IC treatments. For all practical purposes, they have IC.

Chelle, you could be one of those patients... keep pushing for treatments that work...

Sending hugs,

[Nicole in ATL]

I had one in-office cysto that showed normal findings.

Then I had a hospital cysto/hydro that showed small bladder with inflammation and scarring: diagnosed with IC.

My uro treated me like I had IC before I had the official diagnosis. I am sure other docs do that as well.

Hope you have some answers soon.
Nicole

[MelanieJ]

Jen,
That's exactly what happened to me. The hydro/cysto doesn't always indicate IC, since there is an ulcerative and non-ulcerative type. Thank goodness that researchers are recognizing this now and the word is getting out. It's bad enough that I had to wait 1.5 years to get the diagnosis because of that, let alone all the people who ended up going for years and years without help.

:( Melanie J.