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  • Newbee

    Hi there,

    My name is "Wallander", after the Swedish detective-novels/series. I'm female, 33 years old.
    My story probably begins somewhere in 2007, when I first suffered from acute urine-retention. Most likely due to medication I was taking back then.
    It never fully recovered, and after urodynamic testing, the 'diagnosis' was that my bladder doesn't function well. I had to learn to cath tube myself when needed.
    It has always been a difficult and painful thing to do. In 2009 I had to spend 3 days in the hospital because my kidneys seemed to start overproducing after having a retention that lasted a little too long. Everything calmed down luckily, so I could go home. I didn't need check ups anymore either.

    In the first few months of this year I suffered from a few bladderinfections. Some cleared up with meds, some lingered on. After my last one I noticed the pain didn't clear up anymore. I took my urine to my GP several times but she couldn't find anything.
    I asked her for a referral to a urologist again, which she gave me without any problems.
    At first, this doc seemed to get it. Especially since he was very willing to put me under general anaesthesia when I asked him to for various reasons.
    He talked about a cystoscopy when an ultrasound of kidneys/bladder and Xray of my tummy didn't reveal any problems.

    But then, when nothing showed up he thought the exam would be unnecessary. He was so convinced nothing would show up, he even told me the proof was right in front of him: the test to see how strong you pee and how much is left in the bladder told him everything he needed. There was the problem, there was the cause of the pain.

    I insisted the cystoscopy should be done, as was talked about before. He did go along with that.
    Last Monday I was scheduled for it, with a different doc how did the procedure. They would also do the stretching of the bladder.
    At the end of the afternoon the specialist came to tell me that they had found that nothing was wrong on first inspection, but my bladder started to show petechial hemorrhages and that this was evidence enough I have IC.

    At first I was relieved. Finally... I was right. Glad I asked for the anaesthesia as well, since at least they were able to do the stretching.

    Right now I'm waiting for my first instillations. I was hoping I didn't need them, and the urologist said that it could be that I wouldn't.
    Two days after the procedure though, the pain started to get so bad without responding to Tylenol and NSAID's that on Friday I got a prescription for oxycodone. My appt for the instillations has been rescheduled from halfway in October to 2 weeks from now.

    With oxy, the pain has become do-able, today I haven't taken anything yet, but I'm kind of anxious about how it will be later on. I know I shouldn't be.... but well, I never had this much pain before, so I'm a little scared.

    I hope that the instillations won't be too troublesome. Especially the cathtubing: it's a real big issue for me and the one doing it to even being able to put the thing right. (I've had docs/nurses spending up to 30 minutes trying and trying without success, and even had one who just gave up and sent me away with valium. Which of course didn't help at all...)

    For me the instillations will most likely be a mental challenge due to my too many bad experiences with cath tubing, but well.... there's not much I can do about it than just relax as much as I can.

    So anyway... that's me and my story.


    Wallander

  • #2
    to the IC Network. It does sound like you've found a physician who is willing to work with you towards finding some relief for you. I find that if I relax my body, a catheter isn't horrible --- not fun, but not awful. You can also request that they use the smallest catheter available.

    Have you started the IC diet? That's one thing that can be a real help to anyone with IC. You'll find the link to the latest food list in my signature below.

    Sending healing thoughts,
    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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    • #3
      Thanks for your reply

      Even though a smaller cath tube does help with the pain itself (I mean a ch20 or a ch10 can make a whole world of difference) that's not so much the real issue. Some stare 'in wonder' at my lower body wondering where on earth the 'second opening' is.
      So there's a lot of grabbing, misplacing, slipping away, and poking my uterus.
      But, knowing whether they will use a small or big cath tube will surely help in not freaking out too much beforehand, that I know :-)

      I have been reading about the IC diet, but haven't started one yet. I'm going to check out your link. I have to say I'm pretty bad at maintaining diets though... but reading and informing myself won't kill me :-)

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