Not sure IC but symtoms mimic?

[lookwho3]

Has anyone else been told this?

The dr had said that the tests show no inflammation, all the other tests are negative as well. BUT that he knows my pain is real and that I exhibit all the signs of the illness. He says perhaps I am way at the beginning of the disease and that is why you can't see the illness in the bladder yet.
Has anyone else been told this?
I had my first instill yesterday as a hope that he is right and this might help, it was my choice to try this. Hurting like hell today, like a flare.
The pain is outrages!

TR

[leelee88]

Do you have any of the other symptoms that come along with IC.. Frequency, Urgency, Pressure, Food sensitivity? I know all of us are differant, but when it is just pain there could be other things that mimic IC that I would want ruled out before I was stuck with the Dx of IC.. Like PFD or Endometriosis. But I am not saying that it is not IC because there are people with IC that there only symptoms are pain.

[lookwho3]

yes Ronda,
I have been tested for everything under the sun.
I had a complete hysterectomy in 2004 and so there is no more endo..

The pain does flair more when I eat certain trigger food, so I have been on the elimination diet since Oct.......and the pain is still constant.

I did take Elmeron for 2 and half months and had no relief, and my hair fell out!
I was hoping to he hear from others who have the same symptoms i have.

You say that some people have the pain without the visible proof of the illness?
Can you tell me where i can find more data about this?
thanks!
TR

[ICNDonna]

You didn't mention whether you have had either a potassium test or a hydrodistention. These would be the two tests that would diagnose IC. Some doctors are willing to make a diagnosis based on symptoms alone, and if you are comfortable with that, it's okay, but it sounds like you have some concerns.

My bladder looked healthy and normal until it was stretched under anesthesia and the IC was apparent then.

Sending warm healing thoughts,
Donna

[elamar]

I am one of those who just woke up one day with what felt like a uti, and it has never gone away. This just happened out of the blue to me, and I was a pretty healthy person prior. Every test I have taken has come back negative. I was even told by a doctor this was all in my head. My pst was negative. I had in office scope done, all looked fine. I had the hydroextension done, and the doctor saw a few glomerations. I was labeled "mild ic". All of my mri's, cat scans, and xrays all showed normal. It is a maddening conditon! I would urinate every 10 minutes for days at a time and have severe burining in my bladder and pelvis. Once every few months, I would come up positive for uti, but that was it. I have been cultured for pretty much every disease, all negative. I have just started taking Librax as a muscle relaxant for the pelvis. It's the most relief I have felt in a long time. It is actually for a spastic colon, but hey it is helping! But, I did want you to know you're not the only one! I wish we could figure this out and find the magic pill to make it all go away! I do stay pretty careful with the diet, avoid the biggies like coffee, alchohol, and vinegar type things. Also nothing spicy. I use unscented soap and laundry det. I feel all the little things that gave my life pleasure (like bubble baths, that one cup of coffee in the morning, perfume, chocolate) have been stripped away from me. Not to mention my sex life is pretty much gone and I am stuck with a grumpy husband! Alright, I admit I'm grumpy too but I get tired of having to "service" him in other ways! Cuddling just isn't enough for him. I'm tired of feeling like a bad wife and mother. I'm sick to death of not being able to even do simple things like take a walk around the block. All my friends have dumped me (no one wants to be around a sick person who's no fun). Anyhow, didn't mean to rant on so long! Just had a frustrating morning and don't have anyone to talk to. Just my kids pet cockatiels keep me company anymore! I hope you can find some answers and find something that works for your symptoms.

[leelee88]

I know there has been a few people on here that has had a Cysto/hydro and it did not show anything but that is rare. So the dr did do a biopsy and it came back with mass cells and this is a sure sign of IC.

But if you just had an office Cysto then in that event an office Cysto is not a very accurate test to confirm IC. It is missed in most cases when this test is preformed.

[lookwho3]

No, I had the cysto and hydrodistention done in a surgery center by the dr and he did a biopsies.....that all showed nothing, and that I have no visible signs for IC.
BUT as I said, I have all the symptoms and the pain is off the wall since AUG!!!!

This is such a pain ( pun intended!!!)
Thanks for your reply~
TR
Hope you're having a good day!!!

[karen10]

Yes, absolutely, you can have all the tests, they can still can come back negative, and you can still have IC. Cysto/hydro are NOT considered good diagnosis tools (see links below) and this is especially true for early IC. Dr. Theoharides also says that even biopsies of bladders, which typically show mast cells, can also come back negative. There is NO definitive test for IC. However, if you have all the symptoms, ( and in your case have ruled out all else), then the IC docs are now saying, treat the symptoms, see how the person responds and then determine if more tests are needed or if it looks like IC. Potassium test is a good one for early IC, but still not 100% accurate.

Here's some links:

http://www.2006icpatientconference.com/rosenbergtranscript.html
http://www.ic-network.com/md/OP371a_8_28.pdf

I don't have all the "normal" symptoms, such as never had frequency issues, and initially didn't have pain, but over time the pain came. Pelvic pain is one of the main things that my doc (who specializes in IC) does potassium tests for. She said that IC is missed often when patients come in with just pelvic pain. So she tests for IC.

The newer way of looking at IC is not to view it as a diagnosis of exclusion (meaning you rule everything else out first), but to view it as a first line diagnosis so it can be treated earlier. If it looks like IC based on the criteria you read in the second article above, then you treat for IC, if it doesn't respond, THEN do further testing, not the other way around. But, you've been through all that now anyway! Good luck to you! :)

[lookwho3]

Thanks Karen,
That was very interesting reading.

I am hanging in there, but still feeling pretty helpless, as I have seen so many drs.

I am dreading the next instills next week. I mean happy that it might work, but the pain was awful for so many days~
I hope you are having a good day......
thanks again...
TR