Interstitial Cystitis (IC) Support Group

Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.

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Does Anyone Get Kidney Pain From IC?

i went to the E.R. twice for what i was told was it was a uti, which my urologist later discovered i didnt have...my ic has been getting worse and worse and apparently he says its affecting my kidneys now...the hospital thought it was a kidney stone or infection but they could not find any proof, which my dr, whom i trust, said was because the kidney pain was ic in the kidneys...he said he cant prove it but that he has seen evidence in 1 other patient under cysto of ic in the kidneys...has anyone heard of this or is anyone experiencing this? it makes an already dire situation just a little more hopeless...

Replies

deleted_user
deleted_user

Oh my goodness, finally someone knows or has the smae thing!
Yes I have the same $%$% thing. Everytime I tell the stupid doctors
they look at me like I'm nuts..
It literally feels like I have spasming and exruitiating pain in my kidneys.
Thank you for letting us know! I'm so sorry your going through so much pain, I will pray that you will get relief from the terrible pain.
Your right about the hopelessness, I cant take these doctors that dont know what their doing.
Hope you feel better!
tracy6878
tracy6878

yes thats exactly how it feels...i will let you know what i can find out ...
deleted_user
deleted_user

When I have a severe flare-up, my kidneys also hurt. They spasm and it feels like I have another kidney stone. When I told my urologist, he basically said I was nuts because my kidney ultrasound was normal. I hated him. But now that I've moved back home to IL, I can't find anyone to treat me! This disease is relentless. I hope you feel better soon!
deleted_user
deleted_user

I used to also get really bad kidney pain. When my pain would flare up, I couldnt lay down flat or sit back all the way. It felt like I had a softball with knives in my kidney. Yuck!!!!
deleted_user
deleted_user

Yes!!! My bladder has been getting progressively worse and my kidneys have been killing me. I'm not sure exactly how my Dr. feels about it. After a few more DSMO treatments, she is giong to scope me again. My ultrasound was also negative, but the nurses at the urology office have also heard of IC hurting your kidneys too.

Happy to see I am not alone with this pain, but sorry we all have to deal with this.
tracy6878
tracy6878

my dr said during cysto in another patient, he saw the same red spots ic makes in our bladders in the kidneys...i have been looking for info online and it seems that its a natural progression of IC since they cant cure it...
MalenaS
MalenaS

Yes! I also get pain in my kidneys when I'm having a bad IC flare. For me, it's usually my right kidney. My IC pain is always in the lower-right quadrant of my pelvis.

I've had IC for 22 yrs and literally have tried everything out there. I have a new urologist He's had me on Atarax for the last 2 mos. So far, I haven't seen any change in my symptoms. :(
tracy6878
tracy6878

i swear they just throw new meds at us in hopes we will just give in, shut up, and go away...dont let em win, keep on em...
deleted_user
deleted_user

With you all the way girl! Great attitude!
deleted_user
deleted_user

Man, I had the same experience! Years ago, I was having kidney pain on top of my IC pain, so I went to the only doctor in SC that I knew of at the time (who knew about IC) and he was such a jerk!!! I hadn't seen this particular doctor for about 2 years. He told me he could no longer help me and acted like I was nuts for coming to him with kidney pain. He said, "I'm a urologist, not a kidney doctor!" I walked out and didn't even pay for the visit. I would never go back to him ever! I went to him for a few years and let him do all his experimenting, but as soon as I told him I couldn't do anything else, he didn't want anything to do with me. So insensitive! Errrrr! I've met a few doc's like that over the years! I wish they could walk in our shoes for a few weeks so they'd know what it's like!
deleted_user
deleted_user

I wasn't sure if it was related, but suspected as much. I get terrible kidney pain from time to time as well.
deleted_user
deleted_user

I hope you will start feeling better real soon! I've had IC for 14 years now and have had the kidney thing a few times, but it always passes just as quickly as it showed up. I do hope the same will be true for you! I just wanted to give you some hope that this could be a temporary situation that will pass. That is my hope for you!
Ellen