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Join date : 2016-07-22

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PostSubject: Can't endure much more of this   Can't endure much more of this EmptyFri Jul 22, 2016 8:58 am

OWWWWW.  That's all I can do today, is moan.  I can barely think, that is how bad the pain is.  It sent me to the Emergency Room last week, where I was put on a morphine drip.  6 hours of blessed relief.  Than, back to square one, with the added frustration of an intestinal blockage that I then had to wrestle with for two days.

My IC story started almost 6 years ago, when I was injured at work.  I already know how hard it is to believe that a person can become seriously injured at a desk job, but it happened to me.  I tore both my rotator cuffs and herniated my cervical spine from typing and MOUSING for Years, and Years, and Years.  I guess that is why it is caused a "cumulative" injury.  While I was recovering from botched surgery which was supposed to repair my right shoulder (my dominant arm), I started to notice that I was having trouble sleeping through the night because I always had to urinate.  As this had NEVER happened to me before, I didn't know what to do.  It went from bad to worse to horrible pretty quickly.  I was diagnosed with Neurogenic Bladder due to where the cervical herniation apparently impacted the nerve bundle that affects the bladder.  And the neurogenic bladder led to me developing Interstitial Cystitis, diagnosed by Cytoscopy.

The pain is so severe at this point that the pain medication I am prescribed no longer does much to quench the fire.  It not only affects my bladder, but my colon, my stomach, my upper thighs, and basically my entire pelvic organ region. Crying or Very sad

I hate to be so sad and down all the time.  I am seeing a pain psychologist tomorrow, but I don't hold out much in the way of hope for any help.  In fact, I'm wondering how I am going to sit through 3 hours of testing when I can barely sit in a chair for more than 15 minutes without screaming.  I am a Workers Compensation patient, and the care I have received has been marginal to middling to nothing.  This disease has come close to destroying my life, and I don't know how to crawl out of it.  There are days when I wish it would just kill me already and get it over with.  Killing me so slowly is just criminal.  I hate this bitch disease that has no cure and no hope.  With a passion.
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Join date : 2016-04-04
Location : Adelaide

Can't endure much more of this Empty
PostSubject: Don't give up, you have many options.   Can't endure much more of this EmptyTue Jul 26, 2016 10:15 am

Have you discussed an Interstim trial with your urologist? I feel your pain.  I like the way you say killing me slowly is just criminal. I often say to my wife that this disease just isn't right and no words can adequately describe it, sometimes I wish it was terminal then I know it would end. I can not take pain killers because they stop my bowls from working.  Terrible constipation. In can feel your words in my soul because they are my words. They are our words. I describe it as hell on earth.  I remember watching a television called the walking dead once and that is how i describe my life.  I went to see a psychiatrist a few times but all he could do was prescribe more drugs which affected my bladder even more and made me retain more urine. I pray for our lives that relief comes soon but i like you cannot take much more of this. I can't even tell you to stay strong but stay strong. I wish that a male politician developed this condition so that it would become a priority for governments to find a cure for. I think this disease revolves around a bacterial or viral trigger in the nerves around the bladder,  these things don't just happen, something caused it and something should be able to fix it. I like the way the pain psychologists tell you to meditate, I told her I can't meditate because I'm in pain, she said meditating helps to reduce pain, you'll have to try it. Pain psychologists tell you that pain is really just in the mind and that you can retrain your brain, I felt like punching her in the face. Maybe some pain can be retrained but bladder pain seems different. You have to try it because it definitely works for the majority of people. Good luck and let's pay Prof Marshall and Prof Antonina find some answers soon.

Last edited by dantheman on Tue Jul 26, 2016 12:20 pm; edited 3 times in total (Reason for editing : Thought of something else to say)
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