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Finally I know what is wrong with me

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  • Finally I know what is wrong with me

    I have been recently diagnosed with IC. I also have Endometriosis and Poly cystic Ovary Syndrom. (I was also diagnosed in High School with Fibromyalgia, but I don't know how I feel about that one.)
    I have had bladder and Kidney infections often since I was in High School. (I thought it was normal to have one at least 4 times a year-that's how messed up I was in my thinking) I always felt like I had an infection, even though my tests would come back negative. Last September I became REALLY sick. I was in a lot of pain, I was nauseous, I was exhausted, and nothing was making me feel better. Then in Dec. it just all started to go away, but then I got another kidney infection and WHAM, it all came back. My latest flare has been gong on for about a month now. I don't want this to consume my life, but right now it seems to be doing just that. The pain, the anxiety, the never knowing IF I will feel any better "tomorrow", never being able to plan anything (which as a mother to 4 kids is kind of ridiculous) not knowing if it will be a good day or a bad one. I am a person who has a schedule for everyday and everything. I have to plan out every aspect of my life, so this new way of life is not only physical, but mental also. At least now that I know what is wrong with me, and have found this site, I know I am NOT crazy, I am NOT going to die and finally have some ideas on how to help myself feel better. So thankful...

  • #2
    Oh yeah, I have a few questions. Does anyone have sevier kidney pain with your IC? Is that common? Can anyone suggest a good Dr. in Utah? What are Instillations (I probably spelled that wron)? I have seen them mentioned, but have no clue what they are. Thanks

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    • #3
      finally know what's wrong

      Originally posted by cassidy29 View Post
      Oh yeah, I have a few questions. Does anyone have sevier kidney pain with your IC? Is that common? Can anyone suggest a good Dr. in Utah? What are Instillations (I probably spelled that wron)? I have seen them mentioned, but have no clue what they are. Thanks


      Hi Cassidy,

      I can't answer your questions about kidney problems or a doctor in Utah.

      An Instillation is where medication is placed directly into the bladder using a slender catheter. There are different combinations of medicines that are used, depending on the doctor's protocol and patient response and prefernce. Some instills are done by a nurse, for different periods of time, for instance I had a series of six, one week apart, but again, everyone is different and many people on this forum actually do their instills at home. If you scroll down to the forum search, you will find info. on the different meds that are being used. I hope that helps.

      I was wondering if you've started the IC diet. It really helped me a lot when I was first diagnosed, and I still follow it.

      Is your doctor addressing your kidney problems?

      For me, heat helps a lot with pain so I often curl up with my microwaveable heating pad.

      I'm sorry you're having a hard time right now.

      Keep posting.
      Laurie

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