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  • Finally!

    I had my first Cysto/Hydro with biopsy on April 15th.
    It was in the local hospital, done under general anaesthesia. The pain after I woke up was HORRIBLE. My uro had left by the time I woke up, so the post-op nurse was taking care of me, she gave me 4 shots of morphine while I was in the recovery room. It didn't reduce the pain much, but made me a little more comfortable. I left with my mom after about an hour, slightly delirious, extremely anxious, and confused - all I wanted was to go home, to something familiar.
    The nurse, by my uro's pre-instruction, gave me a prescription for five days of Macrobid and four days of Tylenol 3's with codeine. The Tylenol didn't help very much, and I bleed for 2 1/2 days afterwards. After I ran out of the Tylenol and was still in horrible pain, I tried calling him to do something about the pain and ask if it was normal to be in so pain, etc.
    He had moved offices. I couldn't reach him.

    Four days ago I headed to the ER at the same hospital I had the surgery done. I explained my symptoms (I also seemed to have some sort of virus or infection) and said I needed to talk to the on-call urologist. The answer to that? "No. You'll see the emerg doctor." Then she checked my temperature, it was 101.5 F (my regular temp is, for some reason, 95.5 to 97.3, anything higher is a fever) and she said "You don't have a fever," so that was left off my chart.
    After waiting three hours, I finally saw the emerg doctor. What he did do: checked my urine for a UTI - it was negative. He also felt my abdomen.
    What he didn't do: bloodwork, pelvic exam, check my pupils/throat/ears.

    After all that time, he said, "You don't have a UTI. You probably have the flu, so you don't need antibiotics." When I asked about my bladder pain (after specifically telling him I was unable to get in contact with my uro), "You have a chronic condition and I won't prescribe you narcotics." Are you kidding me?! (And who said I wanted narcotics? Isn't there any other way to help?)
    He dismissed me after giving me my uro's new number that was on file.
    My mom flipped out. She thinks it's because I'm only nineteen that I didn't get any proper help (she wasn't allowed to see the doctor with me.)

    So after four days of calling my uro's new number, someone FINALLY picked up, and I have an appointment on Wednesday early morning. The receptionist sounded shocked that nothing was done. So that's my huuuuge long rant, but finally I can start feeling a bit more positive. If you read all of this, then you are a very patient person and I thank you.
    21 years old
    dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

    ♥ looking for a way or medication to help stop spasms ♥

  • #2
    Update..

    I finally went to my walk-in doctor, she said I had a horrible ear infection, and gave me amoxicillian for it.
    I just got back right now from my urologist, and I'm feeling really hopeful. He said there were a few hemorrhages after stretching, and said I've been taking care of my bladder, whereas if I had kept up my lifestyle and habits from when I first started having symptoms, it would have been much worse.

    He started me on 10mgs of Elavil at night (decreasing my paxil from 60mgs to 30mgs) and Detrol LA 4mgs. The great news: my bladder unstretched could only hold 10 mL of liquid until I had pain and had to urinate. Stretched, I can hold, in theory, 1100ccs of liquid (although that would come with a LOT of pain). He said if I start bladder retraining now, while it's still stretched out, I should be able to hold at least a cup of liquid without pain or urgency, as long as I keep it up and continue with the meds/IC diet. I might be doing hydros every once in a while (probably 6months to a year to keep it stretched) if this works out.

    Sooooo happy to have some sort of hope after so many years!!
    21 years old
    dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

    ♥ looking for a way or medication to help stop spasms ♥

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    • #3
      The hospital doctor should be reported to the medical association. The hospital that you went to don't seem to have any comppasion or care about there patients, they need to be reported as well. I am so sorry you went through so much pain, I hope things will improve for you even more now that your seeing your uro again.
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      <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
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      • #4
        Thanks Linda!
        I'm really scared to speak up about it ._. I feel like I'd be attacked or disbelieved if I brought it up to any officials, because of my age.
        I will talk it over with my mother tonight and see what she thinks. I know both my uro and walk-in doc support me.
        21 years old
        dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

        ♥ looking for a way or medication to help stop spasms ♥

        Comment


        • #5
          I would definitely write a letter to the administrator of the hospital where you were seen in the ER. The worst possible thing would be that the letter might be ignored --- but if there are more complaints about the same doctor, that changes things a lot.

          Sending gentle 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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