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  • White Pain

    Today I dropped a serious blood clot from my bladder into my pad while I was sitting on my b/f's couch at his house. Since then I've been pale and weak and my thinking isn't very clear. I have a cold sweat when I have these episodes that tells me I'm pale. I just feel so out of it.

    The woman who manages my case for my housing told me I should go to the ER. But I don't have the nerve. I'm afraid that if I do . . . the doc will *make* me get a surgery to remove my bladder and either hook me up to a bag or route it through my colon. That's what my uro's arnp talked about at my last visit.

    And I don't see that improving my quality of life. I see it making it worse. The average bus route is about 30 mins from one end to the other. If I had liquid stool (aka what was formerly urine) . . . it could very easily be a disaster! And after the harrassment I endured from fellow students on a crowded bus for requesting a disabled seat when I was going to school to get my GED (because if I don't have a cane/walker/wheelchair I must not be disabled, right? ), I don't want to even think about how I'd be terrorized if I had the bag (not to mention my concerns about keeping things clean).

    So now I'm home (finally) and fighting with myself (as I have been since this heavy bleeding started about 2 weeks ago). Half of me says, "You need a doc. Something is wrong here. Your pain level is through the roof. You're eating about 1/4 of what you normally eat and have been for almost 2 weeks! (Did I mention I have lost my appetite too?) You're weak. You have these pale, dizzy spells. Something is very, very wrong." Then the other half retorts, "It beats the alternative!" And they go back and forth all day.

    I'm so tired of fighting.

    I'm sorry. I shouldn't have said all this . . .
    Last edited by ICNDonna; 07-07-2011, 01:34 AM.

  • #2
    I am so sorry that you are struggling so much. Please seek medical help. You don't have to allow them to remove your bladder, but obviously you need some medical intervention. I know that when you lose blood you become iron deficient, and I know that most of us can't take vitamins, but your doc could give you a shot. I know things are hard right now, believe me I haven't been to work in 6 weeks, and I had to cancel all road trips this Summer. I hope things get better for you. If you keep having depressive thoughts maybe you should get in therapy, or even just call the suicide hotline if you don't have someone to talk to. If you want to talk to someone who understands friend me on FB, I am under Sabrina Patterson Davy. Please let us know how your case progresses. I am really concerned right now with my condition because I don't feel my doctors are treating it aggressively enough.

    Comment


    • #3
      I agree. Whether it's emergency room or your doctor's office, you need to be seen as soon as possible.

      You mentioned a clot --- if you are menstruating, the clot could be a part of that. Before my hysterectomy, I had a lot of clots.

      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

      Comment


      • #4
        Yes, definitely please see a doctor. You are always in charge of your treatment. A doctor can make recommendations, but can't force you to have surgery. And even if one doctor's office recommends a treatment, you are entitled to seek a second opinion, or third. I've seen probably 6 urologists since my IC started. Several recommended interstim, but I continued to seek doctors til I found the one I have now & we manage my IC with less drastic treatments.

        It doesn't sound clear from your post where the blood came from, but I can tell you that when my mom's bladder started bleeding, it was the best thing that had happened to her in years! My mom was diagnosed with IC because of her symptoms and because of my history of IC. In her case, it turned out she doesn't have severe IC, like I do - she has mild IC, but what was causing the severity of her symptoms were multiple kidney stones that hadn't shown up on traditional tests. When she started bleeding, the doctor changed the tests they were running, found the stones & removed them. Today she is much much better, with relatively few diet restrictions and minimal IC symptoms.

        I can see that you don't feel very hopeful & I understand that, but it's worth checking out for the possibility of feeling much better, and also to prevent anything more serious from happening. You don't want to neglect a potentially serious problem and then wind up with more drastic treatment than necessary.

        Please seek treatment, ok?
        Kadi

        -------------------------------------------------------------
        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.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "


        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

        Comment


        • #5
          The clots are def. coming from my urinary opening. I can feel them leave. It's like little bits of sponge . . . and they kind of "pop" when they pass out of my body.

          I still haven't contacted anyone besides this board, my boyfriend, and my best friend (and the mental health lady I mentioned in my earlier post).

          I'm really afraid, but sabstory's post is making me feel a little more confident. IDK what i'll do. I'm just so scared they'll force me in to a choice between having something done to me that I don't want done and/or losing my state aid benefits for being non-compliant with treatment on the basis of my refusal to let them do it.

          I could see having my bladder removed if I was like 80 or something, but I'm twenty-five. I just can't imagine having a very good quality of life for the next sixty-ish years without my bladder. Granted there's a lot of pain, but the embarrassment and other social aspects of having a bag (or even a re-routed urinary tract) outweigh that in my mind.

          My best friend is getting frustrated with me for not going to the Dr or ER about this bleeding and weakness (not that I blame her; it has been going on for a while, I can see how she'd get tired of hearing about it esp. with me not doing anything to improve the situation).

          I told myself all day yesterday that I'd go today. And then I didn't.

          I need more than just help for my pain and bleeding. I need a confidence boost, or something to fight this fear and anxiety.

          Comment


          • #6
            Being afraid is understandable --- but you will be less afraid once you find out what's going on. It's always easier to face the known than it is to be terrified and NOT know.

            Don't jump to a conclusion that you might be forced to have your bladder removed --- that just isn't going to happen. In fact, doctors are extremely reluctant to take that step until all other treatment options have been tried and failed.

            Just think what a shame it would be if what you have is a bladder infection, which by not being treated will only worsen.

            Please get medical attention as soon as possible.

            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

            Comment

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