Newbie: Diagnosed in January

[Carin]

HI,
I had what I thought was recurent UTIs. Also, pain after intercourse (since I'm 53 I do use a lubricant). Anyway, I was referred to a specialist. He
did a potassium sensitivity test. I didn't experience horrible pain. more of a discomfort. He diagnosed me with IC, prescibed Eimiron, and I went weekly for 3 elmiron infusions. After the first, I had terrible pain, the second was good, and the third was mild pain. Since then, there's only mild symptoms: urgengy, bladder fullness, some discomfort. I have eliminated chocolate and rye bread, my two favorites...lol.
As with most newbies, I have Qs and doubts about the Dx.
Doubt:
is this really IC?
do I need a cystoscopy/dystention?
Everyday I'm concerned/worried if the terrible pain will return.
My husband is supportive but feels helpless when I groan in pain. We haven't had relations because he does't want to cause me that pain. Poor guy.
That's my story. I joined this forum for info, suppost, and advice.
Thank you,
Carin
:help:

[leelee88]

Hello and :welcome: to the ICN..

As far going for more testing that is up to you if you are questioning your diagnoses..Some things can mimic IC.. I guess it all depends on how much you trust your Dr. But it never hurts to get a second opinion...

[ICNDonna]

If you're not feeling confident about your diagnosis, by all means tell your doctor. Some urologists are using the potassium test to diagnose; others prefer hydrodistention. I suggest you read about both in the Patient Handbook before discussing this with your doctor. And it's always okay to see a different doctor for a second opinion.

Warm welcoming hugs,
Donna

[SharonA]

:welcome: to the ICN...:)

Believe me, learning that you have something that has no cure can be very disconcerting. You are very normal in questioning the diagnosis. It is always okay to get a 2nd and even a 3rd opinion.

:):):):):)

[BT2008]

Hey Carin,

:welcome: to the ICN!

I never had the potassium test; I assume that, based upon my condition at the time, my urologist chose to go straight to the cystoscopy & hydrodistention, which I had 4 days after my first appointment.

Since there are only so many treatments available for IC, if you are not sure that you do have IC, I agree with everyone else: Get a second (or even third) opinion. If it is not IC, then there may well be other things that can be done for you.

The jury is still out about the necessity of needing a cysto/hydro for properly diagnosing IC. Apparently, many docs are now diagnosing IC based upon symptoms alone.

But, I do know that a cysto gives the doc an actual look inside your bladder, and that oftentimes it is only after a hydrodistention that the signs of severe IC become present, e.g. glomerulations, lesions and/or Hunner's ulcers.

Even if you do have IC, since your potassium test did not cause you a great deal of pain, maybe you do not have a severe case of it yet. If so, then you would probably benefit greatly from learning to live on the IC diet (it's not that bad, I promise!) and you may be a very good candidate for successful treatment with Elmiron. If you do those things now, then maybe you can 'nip it in the bud' and prevent your IC from progressing in severity.

I do hope you get a more definitive answer soon, because usually that makes a great deal of difference for all sufferers, emotionally & psychologically! Let us know how it goes! And, take care...

~Beth

[VickiB]

Hi Carin and :welcome: to the ICN!

You don't really say what tests you've had or how long these symptoms have been bothering you. But I'm guessing you don't feel the specialist covered all possible bases before diagnosing you with IC? If so, like Donna said, let him know your concerns. And if he blows you off then it's probably second opinion time.

I never had the cysto with hydrodistension. My Uro diagnosed me based on my ongoing history of symptoms, multiple tests for other possible causes which showed nothing, and finally the PST. I do think it's natural to wonder if any diagnosis is right and it's important that one is comfortable that it is a correct diagnosis!

I know you said that everyday you worry the pain will return. I just want to say that for most of us, with treatment, diet and some tricks, we end up way better than when we were first diagnosed!

Vicki

[Carin]

Hi again!
Thank you for responding so promptly with your words of wisdom. I called the doctor today to ask more about the IC dx, but mainly for my peace of mind. I'm awaitng a callback.
Again, thanks so much.
Carin

[targirl81]

Hi Carin! I noticed that you live in NC and I do too. I was initially diagnosed with IC in 1998 in Atlanta and moved to NC in 1999. Nothing ever really helped me until I suffered a MAJOR flare in the summer of 2005. My local urologists were not able to give me much relief and I actually found my current urologist on this very message board. His name is Dr. Robert Evans. He practices in the Greensboro/Winston-Salem area. I live in the Cary area. Dr Evans has totallly changed my life. He is fantastic!!!!! :angel: