Cysto showed bacteria, no damage

[artsychic76]

I had the cysto in the office yesterday. He said that my bladder looks normal, clear for cancer, tumors, ulcers, etc. He also said there is some bacteria around my urethra--opening of my bladder.

He didn't say rule out IC but didn't confirm it either. He said the bacteria would be tested and be back by Friday.

I've had countless urine tests and they call come back negative.

I'd love to believe that since the bladder is normal and healthy that i DONT HAVE IC and I just have an infection that has not cleared up.

any thoughts?

[artsychic76]

I had the cysto in the office yesterday. He said that my bladder looks normal, clear for cancer, tumors, ulcers, etc. He also said there is some bacteria around my urethra--opening of my bladder.

He didn't say rule out IC but didn't confirm it either. He said the bacteria would be tested and be back by Friday.

I've had countless urine tests and they call come back negative.

I'd love to believe that since the bladder is normal and healthy that i DONT HAVE IC and I just have an infection that has not cleared up.

any thoughts?

Here are the reasons I feel that I DON'T HAVE IC:

1) I've been totally healthy otherwise. No illnesses, diseases, always good health.

2) I would think that damage to the bladder would indicate IC, mine was healthy.

3) The bacteria seems to be the REASON I'm having these symptoms. I can't see how bacteria can't be bacteria causing the problems.

4) I know people say the "other" cysto w/ anesthesia shows it better. But my Uro hasn't suggested this yet. Do I push for it? Will that even tell me otherwise?

5)This illness sounds very very difficult to control and I don't think I can handle it mentally. That may sound weak or defeated, but I strongly feel that I DO NOT HAVE IT.

[Patrice]

any thoughts?
I hate to say it, but my first thought was how does the doctor know there was bacteria around the urethra from a cystoscopy? Bacteria are microscopic..you have to grow colonies of them on a petri dish to see them. Maybe he saw inflammation on the urethra? I'm not trying to burst your bubble...when I was undiagnosed, I had so may false hopes: try this, try that, your bladder has yeast in it...I carried a long list of reasons I did not have IC: didn't wake at night, didn't go every 1/2 hour (just eery 1 1/2 hours), blah blah.

But I did have it. And I got treatment. I still have flares, but went from 24/7off the chart pain to rare flares. So if this doc is wrong, please don't despair. And if I'm wrong and he could be right, all the better.

[Freckles]

I think the most important thing for you to do right now is don't panic. If you start getting all worked up about this it will only make your symptoms worse. I know it's scary. When I was trying to get a diagnosis I was a complete wreck so I know from experience. Try to stay calm. My bladder also looked normal and I have IC. You do not have to have a red, raw, ulcerated bladder to have IC. But, still you may not have IC. What are your symptoms? How long have you had them?
I would go to the doctor all the time thinking I had a bladder infection only to be told that I didn't. I just kept saying "then what is wrong with me". No one wanted to listen. Finding a good doctor is the hardest part of this disease. Try to stay calm until you find out for sure. Really I think the main way they diagnose this disease is just by your symptoms. I think they do the hydrodistention to verify it, but even if your bladder looks normal you can have IC so ????
Best of luck
Karen

[Sarojini]

IC is very rarely visible on on in-office cystoscopy. Usually either a hydrodistention under anesthesia, or the Potassium Sensitivity Test, is required for a diagnosis. The reason is, IC bladders can look completely normal using in-office cysto techniques; there are many people on these boards who have severe IC with ulcers, yet come up negative on the in-office cysto.

Also, bacterial contamination cannot be seen via cysto -- you can see inflammation, but not "bacteria" themselves, as the cystoscope is not a microscope. Perhaps he took a swab of the irritated area and is going to test that to see if he gets anything to grow out.

I hope you do not have IC. You shouldn't panic about it yet, and even if you do, there is plenty to do that could help you out. It's not the end of life; it is simply the end of life as you know it -- you will have to change some things you do, but there are a lot of things in life that cause you to change the way you do things (ie, get married, get divorced, etc). You can handle anything you put your mind to handling. Do not sell yourself short and say you just can't handle it mentally -- you can! :grouphug:

[shvlnose]

Hello!

My IC started with the suddend onset of pretty severe pelvic pain in September of 2004. I had an in office cysto in October that was clear - they saw no evidence of inflamation, stones, cancer (thank god!), or anything. I was basically told "gee, we don't know why you're in pain. It must be all in your head. Please take this anti-depressant." All urine cultures were also negative. My original Drs said that I didn't have IC because if I did, I would be waking up at night more often (I was already up 1-4 times every night), I would be peeing more frequently (I was going ever hour to hour and a half), and I had minimal response to ditropan (they told me that IC didn't respond to ditropan - I probably had OAB).

I continued to have daily pain and in April of 2005 I was diagnosed with IC based on a Potassium Sensitivity Test (PST), and started taking appropriate meds.

A new uro requested that I get a cysto with hydrodistention (under anesthesia) - to "confirm" the diagnosis. In my follow up visit he said the "yes, you definitely have it. You bladder looks like a 'classic' case of the disease." I had the irritated/red twig look, but no ulcers.

What I'm trying to say is that it's DEFFINITELY possible to be clear on a normal office cysto and still have IC.

I also was very upset with the diagnosis. It felt like a death sentence. It was/is NOT. I do have to do things somewhat differently - pay more attention to what I'm eating, make sure I get adequate sleep, keep a check on pain levels so they don't get out of control, be careful with where/how/and how frequently I travel. But... I still have a life...I still have fun, friends, family, hobbies, work (I'm still able to work full time - though some people can't). My husband and I are even trying to have kids. I feel OK most days.

I started out in daily pain that frequently ran around a level 4-6 (on the standard 1-10) pain scale. I still have pain nearly every day, but it's mostly level 1 (just enough to know it's there and be annoying), maybe a 2 on a bad day. It is not fun, but I'm totally capable of working around it and enjoying my life despite it. I know that not all IC patients are as lucky as me, but I wanted to let you know... It is possible to have a cysto look normal and still have IC. It is possible to live with this disease and still enjoy your life. It is possible to improve and to feel better.

You may not have IC. Continue working with your doctor and do your research. If he did see some sort of inflamation during the office cysto and the urine culture comes back negative for infection, please suggest a cysto w/hydrodistention or the PST. If you do have IC, you owe it to yourself to find out what's going on so that you can begin the treatments that are appropriate for you as soon as possible.

Sorry this response is to long. Good luck! I hope this all works out for you and that one way or another you feel better soon!
Aly

[Patrice]

shvlnose:

Your story sounds so much like mine, only about four years apart!