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PLEASE HELP...PUJ Obstruction, Fowlers Syndrome and IC

PostPosted: Sat May 13, 2017 3:23 pm
by gellison1992
Please help...I am up to my wits end with this.

I am new here after not being able to find anywhere for support since my diagnosis. I am Gem, 24. I have a diagnosis of PUJ obstruction which was dilated a year ago and stented, unsuccessfully. I ended up with Sepsis post op and stent had to be removed as it was riddled with septic fluid. I had serious right sided pain, sickness, fevers, trouble urinating, often too much but also retaining. I still have all of these things. I am in hospital at least once a month for at least a week at a time. I get recurrent infections.

I have just been back in for a week and had a MAG-3 whilst there which confirmed my PUJ is back. I have been self catheterising for 3 years now as well as I was diagnosed with Fowlers Syndrome 4 years ago as well as Interstitial Cystitis which totally contradicts the FS. The self catheterising is triggering for me due to child abuse and I often end up in tears each time, which currently is 4 times a day per doctors orders. I have now had three uretal and urethral dilatations to no avail. The registrar who discharged me yesterday said my own consultant will see me as an outpatient and will discuss a further dilatation, but the thing is, if it isn't working what's the point? I was rejected for a pyleoplasty so that's probably out unless they re refer me which was suggested. The point is when catheterising is so triggering and the pain is so bad what are my options really? This is ruining my life. I am a therapist and I'm off more than I'm in. I also have children and I am away from them more than I'm with them. My partner is also struggling to keep up when it also gets left to her. We can't be intimate because the after pain makes it pointless so I avoid it. It's to the point now that's its making my already tricky mental health deteriorate. I am sick of living in pain and of no doctor listening to me.

Sorry for ranting and thanks for reading.

Gem x

Re: PLEASE HELP...PUJ Obstruction, Fowlers Syndrome and IC

PostPosted: Sun May 14, 2017 4:08 pm
by wagolynn
Don't worry about the rant it's sometimes good to get it all out.

The last section of this may be of interest to you.
http://steinerurology.com.au/pelvi-uret ... struction/

Best wishes.