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Feeling incredibly validated right now

Oct 07, 2016 7:32 PM

So as most of you know, I have IC. But there is a back story behind the scenes. My PCP refuses to even acknowledge the diagnosis of IC for some reason, even though I'm on a known medication for it. She just keeps telling me I have chronic UTI. So, I went to the urologist on Tuesday with what was thought to be a recurrent UTI after surgery. No biggie. Urine sample done, but here's the kicker. He told me there was blood in my urine again and the alarm bells stated kind of going off a bit. But there was also no leukocytes or nitrites on dipstick. So that immediately confirmed my suspicion that it was indeed an IC issue rather then a UTI. so we chatted for a good bit of time. Checked to see if the Elmiron was still holding me and it is. Adding a new media for the nighttime bathroom trips (every 2-3 hours). But he then said something to me as I was leaving the office that made me feel like I was being heard finally. He said to me, "Amanda, if at any point, things aren't going well, please don't hesitate to call the office. Don't even worry about calling the PCP. Just give us a call. If you are hurting and I don't know about it, I can't help you." Almost wanted to cry at that point, because I thought it was all in my head and I know now that somebody understands, has seen the evidence of it and is finally doing something to help.

Oct 07, 2016 8:33 PM

That is such an amazing feeling, isn't it. I'm so happy someone is listening to you!

Oct 07, 2016 8:38 PM

Amanda, you have a Fabulous urologist! It is sad that you have had to have your pain validated by anyone who is part of your care! Fire your PCP! A Great day for you! I hope you have many more good days to come!

Oct 08, 2016 3:28 AM

Mich, that's the bad part about it. Everyone else on my team does accept and understand the diagnosis except for them. I just don't get it. Only sticking with that PCP because nobody else is taking new patients in my area who have medicare/medicaid.

Oct 08, 2016 9:07 AM

It's a amazing feeling to be validated and heard by a doctor. Ur urologist is a keeper. I would recommend looking into a new pcp or at the least trying to explain the communication problems ur having. I happy for you. 😊

Oct 08, 2016 9:27 AM

Amanda - what an awesome doctor. Am so glad you found him. But am so very sorry for your PCP's attitude.

Oct 08, 2016 9:32 AM

What are some of the signs of IC? I almost always have blood in my urine. My PCP will almost always want to start me on antibiotics but I ask them to culture it first before starting a medication. About 75% of the time nothing grows. Every 6 months I see a Urologist because I do have 2 kidney stones he is keeping an eye on. He said that those wouldn't be causing the blood in urine but he didn't know what was. I just laugh and tell my doctors that they really shouldn't expect normal from me.

Oct 08, 2016 10:55 AM

Get a new PCP you pay them. I had to go through 3 before one figured out I had PE in my left lung and I wasn't just breathing improperly 😖 . Now I have a whole new team and they are awesome. My insurance allows me to see doctors without need of a referral so I got to pick my specialist I see 😄

Oct 08, 2016 11:12 AM

Mimi, for me it almost always feels like I have a UTI(burning, frequency, pain). But everybody who has IC experiences it differently. IC is almost always a diagnosis of exclusion, Normally, I think IC could be diagnosed by cystoscopy with hydrodistention. But I maybe a little rusty on that. Hoping that Flappys or even Gibber might be on in a little while to help. I'm only a newbie with it (diagnosed 4/2016).

Oct 08, 2016 3:17 PM

KNIA, my insurance also allows me to do that as well but still haven't decided on a PCP yet.

Oct 08, 2016 3:18 PM

Mimi, let me see if I can't find some links for you to better explain IC.

Oct 09, 2016 4:53 PM

Sorry guys but could I ask what IC is? I haven't heard of it before. I hope that our all have a lower pain day

Gentle hugs

Oct 09, 2016 5:09 PM

It is such a sigh of relief when someone actually listens & hears you and acknowledges you and your suffering. I have frequency issues and only my chiropractor acknowledges it. I live seeking a WC and probably know every single one for 100 miles!

Oct 09, 2016 5:44 PM

IC-Interstitial cystitis

Oct 11, 2016 4:33 AM

Oh Interstitial cystitis! I know a fair bit about that. Sorry I just didn't get the acronym.
I'm sorry that you are all having to go through that x

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