My introduction

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hi everyone i am a 23 year old women suffering with fowlers syndrome i have a suprapubic catheter and my goal is to tell the world all about fowlers syndrome and to explain whats its like living with this rare illness at such a young age this will be a very detailed blog on medical nature I will be explaining wjat it's like to love with fowlers-syndrome this is a very rare condition that only effects women please feel free to share this blog 

 Thank you 
Tia 
Xxxx

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my story so far

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In 2015 I was admitted to hospital with a kidney infection which I have suffered from since been 3 years old I was born with bilateral so kidney reflux so utis and kidney infections where a big part of my childhood and lots of time in hospital  So in 2015 I was in hospital on iv antibiotics and all of a sudden I was unable to pass any urine or just a little dribble after two days of this it got to the point where I had 2 liters in my bladder so while I was in I was taught to do intermittent self catheterisation which was extremely painful and difficult to pass the catheter after a week in hospital I was sent home doing ISC while I waited to have some tests  But after about 6 months it got to the stage where I couldn't pass the intermittent catheter at all and was in and out with infections needing iv antibiotics I then got fitted with a urethral catheter which was just 10 times worse and the pain was so bad I wasn't sleeping and yeah be night the pain was so sever ...
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A lots been happening

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So it's been a while since my last post I have had so much happen on the 15th March 2017 I had my second sacral nerve stimulation trail which was a awful experience the anestatis decided to give me hardly any sedation so I felt and was aware of every thing it was extremely painful they had to give me gas and air in theater but didn't work and because of all this they could only get 1 wire I'm my back is extremely sore and brused I go back on the 3rd of April to get it taken out urology nurse has siad it's nit looking to good. 17th March I saw my other urologist to see if they can do anything about my infections and other possibilities if this sns dosnt work he basically siad nothing will stop the infections and if the sns dosnt work it's a catheter for life this didn't go down to well it's really hit me heard there is no way I can spend the rest if my life with a suprapubic catheter he also siad I should talk to my other urologist about a urostomy ...
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why am i waiting

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so a lot has happened since the last post I have been in a very dark place and I'm not going to lie I feel like I'm hitting rock bottom so here is whats gone on. SATURDAY 7TH APRIL 2018 I woke up about 9am with such awful stomach pains in my bladder I looked at my night bag and was hardly anything in it. My heart felt like it skipped a beat because I knew my catheter was blocked so I tried to flush it several times and nothing moved so we got the nurses out at this point my anxiety is reaching breakpoint I panic even scheduled changes because I knew how much it will hurt the nurses had me on my back flat on my side and stood up but still wouldn't come out the pain just from the nurses pulling was so bad I was nearly sick a few times. Anyway, the nurses had to stop because of the pain and they didn't want to keep pulling without better pain relief I wanted to knock my self out at this point so they sent me to A and E and now I'm freaking big...
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