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  • #1

    Has anyone else had this?

    Hi,
    I think i have IC, and think this from finding information on it for my daughter. One thing i havent read much about tho is peeing blood. As a teenager i often peed blood and there were times i was up in the middle of the night pacing the floor and just passing blood clots, has anyone else had this? I would go to the doc and my sample would be red and there would be no signs of infection. There was certainly no information on this back then. All the doc would say was you have cystitis. Then things eventually got better. Now after 20 years i am getting symptoms again, i will be 40 this year. Last year i was at the doc because of peeing 30+ times a day, i got tests done for Diabetes Insipidus and other stuff nothing showed. I did see a Urologist who gave me antibiotics (even tho i had no pain) just to see if it would help. I was scheduled for Urodynamics testing and a cystoscope. I was over seas for about 2 months and when i came back i cancelled the appointments( which was silly on my part), but i was feeling somewhat better and was scared of the procedures. ( Didn't know anything about them then).I am still peeing a lot and now getting feelings of irritation. I am rattling on here, sorry. Has anyone else these problems as a child and then as an adult have IC?
    Saltire
    Last edited by saltire; 04-20-2007, 03:18 AM. Reason: correcting sentence
    Tags: None
  • #2
    Hello!

    Although I don't frequently have gross hematuria(visable blood) I almost always have microscopic blood and come out trace on uralisis(sp). I think this is common with IC patients.

    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

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    • #3
      You should definitely see a doctor for the cysto and other tests -- passing large amounts of visible blood is always a sign it's time to go to the urologist! It could be IC, but there are other things it could be as well (bladder stones, etc).
      ****
      Jen

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment

      • #4
        Good point Jen. Blood is often a indicator of more serious problems, and almost always warrants a cystoscopy....

        Erika
        IC diagnosed officially via cysto/urodynamics 1/26/07

        Grade II Endometriosis diagnosed via lap 12/11/07

        "Fall down seven times, Stand up eight."

        "Life is a tragedy for those who feel and a comedy for those who think."

        Current Treatments:
        Interstim Since 5/25/07!
        Birth Control

        Comment

        • #5
          I totally agree that you need to see a urologist. Please call and make an appointment. And let us know what you find out.

          Warm hugs,
          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.           [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

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          • #6
            Definately get into the urologist... the scope... good first step. Someone should also test your urine for Endometriosis cells... just to make sure that isn't the case. I've heard of that happening to a friend who only had blood as a symptom then frequency (and painful periods obviously).
            [SIZE="1"][B]Be well, Alyssa :hi:[/B]

            [

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            • #7
              Hi, I'm sorry if i made it sound like i have blood or blood clots just now, i don't that was when i was a teenager. I have the peeing 30+ times a day and uncomfortable feeling, like i am getting a urine infection. I know i do need to see a specialist to find out whats going on. I will see about an appointment. Thankyou all for your replies. I love this website, i just told my husband that if feels so much better to not feel alone with this. For both me and my daughter. I finally feel like there is somewhere to turn to for advice.
              Saltire

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