Has anyone's cysto/hydro revealed that they DIDN'T have IC?

[Notgivingup0702]

My first one is Nov 11 and I am just curious if there is a glimmer of hope I don't have it. Maybe it could be something else, right?

I'd appreciate anything anyone can tell me.
Anyone come out from it and the doctor says "Your bladder looks perfectly normal."

Of course, that would mean what is wrong with me is something else, and I'd have to keep trying to find out what, but I don't want IC. :(

[Dakota]

You've just asked a great question. I've always wondered about that myself. Can't wait to hear some responses. What I've always wondered was if someone had a negative on the cysto/hydro, if they would come back here to post about it, and what their doctor had to say about the outcome.

[jvr]

Hi,

I had my cystoscopy with hydrodistention done years ago. A urologist told me that the same results could probably be found with his bladder. The results by themselves told him nothing. So, yes hydrodistention are not always totally diagnostic from my personal experience. IC bladders don't always look terrible. IC is more a of diagnosis of exclusion. I remember feeling the same way and praying that it was anything else but IC. Today, years later I've accepted it and don't care what it's called. I just care that I do what I need to do to feel good:)

Jill

[KarenAnne]

My main concern at the time of my procedure was ruling out bladder cancer. One of my urine cytologies came back with atypical cells. But even though the appearance of my bladder wasn't that bad, just the little pinpoint bleeding areas that normal bladders can have when hydrodistended, the bladder biopsy came back with chronic inflammation c/w IC. So I think an actual bladder biopsy is helpful when there isn't ulcerative areas. It is my understanding as well, that IC is a diagnosis of exclusion. There are several other conditions that have the same symptoms. Good luck with your scope.

[maryla]

NUP,

No, I usually have 2-3 a yr. and there are sometimes I think and pray that it's finally healing a bit, Because some of my symptoms have let up a bit. And when I get my pictures, I want to cry it looks so bad. Sorry I cannot really answer that question.

hugs and blessings.

keep us posted on your hydro. I'm getting another one in Nov. Or Dec

[turnaround]

This questions has always been on my mind. My first urologist, who did my cysto/hydro said that it showed that I had MILD IC, even though I had what I thought to be sever symptoms.(That made it seem like I was making up my symptoms to my family) anyway, when I went to a uro/gyne at the university, she said that all bladders show pinpoint bleeding during cysto's. So what does that mean?? I agree with the previous poster that it was important to rule out cancer, though.

[ICNDonna]

An IC diagnosis is usually made by first ruling out other possible causes, then the hydro to confirm. I do know of one person who had no pinpoint bleeding, but had symptoms so when the potassium test became available she had one and, as was suspected, she does have IC.

Donna

[Glenda2]

Well now I am even more confused then before.

My Urologist said there was no bleeding at all in my Bladder.

It was just full of Ulcers.

If there is Ulcers , are you suppose to have small blood trace ? I didn't.

Why ?

Are these Ulcers Holes in the wall line ?

I am so new to this it has flown over my head.

[mary124]

The first one that i had back in 1992 the doctor said I didn't have IC, but when the biopsy report came back it said that i do have it. Now of course, there is no question about it, as 3 doctors have told me on different occassions that my bladder is one of the worse ones they ever seen.

[ICNDonna]

Ulcers in the bladder are another confirmation of an IC diagnosis. I'm not sure how to describe them. Mine just look like red spots, but I have only seen them during a hydrodistention.

Donna

[Glenda2]

My Uro doctor also told me mine looked really bad too.

This makes me so fighting mad .

If my primary care doctor would have taken me seriously 8 months ago when I said I was sick and in pain , I might be on the road to recovery or remission.

But it took 8 months of visit after visit and daily e-mails to get this doc to finally wake up and send me for tests.

I hope they feel bad since I got an actual diagnosis for something.

Specially since it is where I said the pain was located.

Never let a doctor sweep your complaints under the rug and ignore you.

Demand test's to confirm things. Even if the doctor disagree's.
You know you body better then the doctor , and you know when you are sick.

[Cassaundra]

When I had my cysto/hdyro, the doctor told me that my bladder looked "perfectly normal". I was to come back in two weeks for a checkup.

I did not have a Potassium test or a urodynamics test.

My doctor told me that while your bladder may look normal, your symptoms can show that you have PBS/IC.

I had this type of case. Based on my symptoms, the doctors concluded that I had IC. I was put on the big three and am on the way to relief!

Good luck with yours!

[Glenda2]

I am glad I was sent to a Uro doctor.
Glad I had the Cystoscopy.
Sad for the Diagnosis of IC.

If I didn't have the IC diagnosis confirmed , then there would still be questions what was causing the lower abdominal pain. Bad Pain* :help:

[Uzes]

I had my first cysto./hydro. 3 days ago. I went in feeling really apprehensive about how I would feel afterwards because of some accounts of others experiences. Had very little pain, no bleeding and only a little feeling like I was "peeing glass". I feel lucky to have a uro. who is an I.C. specialist and expect this may have helped. I talked to him briefly afterward and he said there were no ulcers and a little pinpoint bleeding. He did say that I had I.C. I forgot to ask about the mucous membrane on the bladder wall. Could someone tell me if there are no ulcers does that mean the membrane is healthy? If so then what could cause all of the pain? Urgency and frequency are a concern to me but the pain is the most debilitating of the three.
I was sent home with cypro. and a non-opiate pain med. (diclofenac) I can't take opiates so have been living with nothing to kill the pain up until now except a little help from the three hot waters bottle that seem to be "velcroed" to my side, lower back and bladder!

Today I have terrifac back and pelvic pain plus bladder spasming. The uro. said I would have a flare up for a week or so. I am usually in chronic flare but this is quite a bit worse.
Could someone tell me if back pain is pretty normal after the procedure? I have two fractured ribs but this pain is much worse than just the ribs and that is saying something!
I will have a follow up appt. to the uro. in three weeks and we will work out a treatment plan.

I feel incredibly lucky to have this forum. It along with the I.C. handbook and the diet have helped along the way. I want to get this thing treated and get back to a life.
I would love to have anyone's input.

[Stella1609]

Ulcers are only present in a small percentage of patients. You can still have IC without seeing them.

[Glenda2]

I only had pain for about 24 to 48 hours after the procedure.
I was given : 3 > Bactrim DS Tablets , for possible infection from the procedure.
No problems.

But starting The Elmiron has sure done it to ME*

[maryla]

Yes, back pain is normal, not just after a hydro, but I have a lot of back pain with my IC.

Hope you feeling better today.

hugs and blessings

[ICPrincess]

I had two in office cystocopy's and was told that all the pain I was feeling was not IC (this was back in the early eighties). Thank God I had the presence of mind to see a third urologist who performed a Hydro and was stunned that the others missed just how bad my case really was (my bladder was severely scarred and bleeding). So much for the two cystociopy's and other urologists I had prior. The first two missed it entirely and of course a hydro will show up what's really there as opposed to just a cystocopy. They stretch the bladder wall, so they can get a really good look. It would be like having a deflated balloon that may have all kinds of stuff written on it, but you can't see it until its fully blown up and stretched out.

I have heard of cases where people have IC, but don't have a torn up bladder like most of us. Not everyone fits the perimeters perfectly. There are people with Lupus who have had negative ANA tests (although this is rare). One thing I would definitely check out (if they do not see anything on your bladder wall) is bowel stuff. Certain bowel problems can mimic bladder pain because they are VERY close together. Good luck to you. :pray:

[Uzes]

I only had pain for about 24 to 48 hours after the procedure.
I was given : 3 > Bactrim DS Tablets , for possible infection from the procedure.
No problems.

But starting The Elmiron has sure done it to ME*

Do you mean that the Elmiron has really helped you or that it has made it worse?

[Notgivingup0702]

Thanks for all of the replies guys. I appreciate it so much. My cysto/hydro is scheduled for Wednesday and I am about one phone call away from cancelling. I am so scared I am making the wrong decision, it is KILLING me. I read the horror stories and don't want to be crying in my dad's arms the next day as I'm in agony and urinating blood saying "Why did I bring this on myself?"
Honestly, I don't know what to do. :(

[Cassaundra]

Notgivingup -

I would still have the hydro/cysto. That way you can A) see how much damage your bladder has and B) may get relief from it in the long run, like Donna or I did.

There will be a lot of pain and discomfort for the first few days but after that you should be on your way to healing!

Good luck with everything!

[KarenAnne]

Notgivingup: I was NOT in agony or urinating blood after my cysto/hydro/bladder biopsy. Yes, I had some blood in my urine, just like the recovery room nurse said. Yes, I had a little pain the first time I urinated. And yes, I had discomfort for a few days. You are going to do great! You are going to be fine & have answers.

[paradiselost]

Thanks for all of the replies guys. I appreciate it so much. My cysto/hydro is scheduled for Wednesday and I am about one phone call away from cancelling. I am so scared I am making the wrong decision, it is KILLING me. I read the horror stories and don't want to be crying in my dad's arms the next day as I'm in agony and urinating blood saying "Why did I bring this on myself?"
Honestly, I don't know what to do. :(

Hey :)

I'm 21, been having inexplicable bladder pain for years now and lots of diagnostic tests with no results, have flares of pain for no reason but luckily right now I'm in downtime and I get twinges of pain/have to be careful scheduling sex/not being dehydrated etc. but overall it's okay.

I had a cystoscopy last summer, and one 2 days ago, both were done in hospital under general anaesthetic, I'm not sure what people are talking about here when they refer to in office cystoscopies... I can only assume they mean they're awake and just use local numbing gel. Is this true? I'm amazed that for people with bladder pain they'd do something like that while you're awake!

Anyway I just wanted to say that after the cystoscopy it's not so bad really. The first 24 hours, peeing can be agonising (I had to hold my boyfriend's hand it was hurting that much) but in many ways it was nothing compared to the actual pain of your bladder hurting. Both times I healed really quickly and was weeing without pain within a day after the operation! I would say definitely go ahead if there's a chance of finding out more about what you have. Good luck, you'll be fine, lots of us have been through similar things and I'll be thinking of you.

Oh p.s. I didn't wee any blood at all either, even though this second one the other day was a biopsy too.

[maryla]

I think that's basically how they can see inside your bladder wall, is to distend it. I use these as part of my treatment and I know ICDonna does too. And I am due for another one soon. Yes, I feel crappy for a few weeks but to me it is worth going through in order to have even slight relief for a while.

keep us posted.

hugs and blessings