Cysto w/o hydro?

[Sunny350]

Hello all - I'm a new poster on this site. I've been having bladder aches and pain, similar to a constant uti, for a month and a half now. After a UTI was ruled out, about a month ago I saw a urologist who preformed a cystoscopy without hydrodistention and told me I didn't have IC, based on what he saw (no ulcers). He did see that my bladder was contracting constantly, which apprently is abnormal, so he then prescribed me Enablex (to calm my bladder down) and 500mg of Nitrofurantoin, an antibiotic, to take once a day.

So now, a month into treatment I'm still in some pain and I'm beginning to think I may in fact have IC after all. My symptoms sound a lot like what everyone's been describing, and I have a history of UTIs. AND, I've read that the only way to truly tell is to do the hydrodistention. Can anyone shed some light on this?

And does anyone know of a great urologist/gynecologist in the Chicago area?

[jax]

definitely get a second opinion. i have and i am FINALLY having a cytoscopy on the 21st and a hyperdistention(i called it hyperextention on my thread oops) and a possible biopsy but i demanded someone do something because i seriously can't stand the pain anymore, i'm sick of it and i feel like no one takes it seriously or knows what they're doing. luckily, i found a good urologyst and hope, that he will be able to tell me something.

[ICNDonna]

It's not unusual for an IC bladder to appear completely normal and healthy during an office cystoscopy. I know mine did. You might want to talk with your doctor about a potassium sensitivity test to help with diagnosis. If your current uro isn't willing to work with you to find a diagnosis, I agree that a second opinion is in order.

Donna

[bellaluna05]

Unfortunately some doctors claim to specialize in IC when they really don't know anything about it at all, just some basic out dated info. You can have really bad IC even end stage IC and no sign of it on your bladder wall, it can be in the tissue where they can't see it. When I was first diagnosed I was told my bladder was covered in hunners ulcers and pin point hemorageing, but the last cysto I had I was told I only have a couple of hunners in one small part of my bladder and it looked normal. Of course that doctor was an **** as you can read in "be careful what doctor you let do this" I now see an expert in IC, he is famous for being the best, Dr. Raz in L.A. and he after trying every other treatment left for me, is removing my bladder and urethra next month. My removal is partly caused by the severity of my IC but also because of the horrible thing that happened to me during that last cysto. Don't get too scared if you read my story, what happened to me hasn't happened to anyone else yet thank God, it was a very big mistake by a very stupid doctor.
Try to see if anyone on this board lives in your area and has a urologist they can recomend. It is so important to have someone you can trust! I pray you get better soon! I hate that so many of us suffer with this monster and yet the world is completely ignorant of our suffering! It just makes me sick!
Sorry I really needed to vent. Feel better!!
Lara

[VickiB]

Hi Sunny!

Yes, I would definitely seek a second opinion! My bladder looked fine in my in-office cystoscopy too, but my Uro said he couldn't tell if I had IC from that. He was just wanting to rule out other possible causes, such as cancer, by doing that procedure. After other procedures & tests came up empty my Uro did the potassium sensitivity test and diagnosed IC.

I wanted to add that the IC diet made a world of difference for me pain-wise, and can be found in the handbook: http://www.ic-network.com/handbook
It might be worth giving it a try to see if your symptoms improve.

I'm sorry you're still hurting and hope you find relief soon!

Hugs,
Vicki

[patricia1]

I agree with the others. An inoffice cysto will not show IC. Usually the cysto's done with hydros or the PST test can postively identify IC. I know my in-office ones never pointed to IC...