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Reflux nephropathy??
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Reflux nephropathy??

Hi everyone,

I have had what i think is reflux nephropathy(sp) since i was born. Doctors and specialists have never been of any help to me.

When i was a small child i remember getting pain in my left kidney if i tried to go to the toilet when i was feeling cold, or if i was stood at the side of the swimming pool. (Odd i know.) It has been like this ever since, i am now 27. Sometimes i feel a twinge so i know that i can't go to the loo or it will hurt too much, and i have to wait.

The pain is excrutiating and i often feel sick at the same time and faint/sweaty.

I have been to specialists many times. They have found that my left kidney is shrunken, about the size of a 10p and that the tube coming off it may be damaged. They mentioned reflux although i don't know if this was ever formally diagnosed. The general outcome of the specialist meetings is always that there is nothing they will do and i've got to live with it.

Has anyone got the same problem as me? I've never heard of anyone else having it and i don't know what else to do. It doesnt cause me pain every day, but when it does i am left in agony and the pain lingers with me all day.Please help?
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Avatar_n_tn
Hello there....I'm sorry your going through this.  I'm amazed that you were told there is nothing they can do for this.  you definitely need to get to the right doctor.  Go to a Urologist or a Nephrologist and go from there.  I'm dealing with Grade 3 Reflux from a screwed up Hystorectomy (he stitched off my right Ureter), so I had a reimplatation of the Ureter into the bladder and have been having reoccurring UTI's for 1 1/2 years now before they diagnosed me Ineterstitial Cyctitis and reflux.  Reflux requires surgical correction if you are an adult, because obviously, you're not going to grow out of it like a child may.  You can have damage to the kidneys or worse, kidney failure if not dealt with.  I pray that you'll find a doctor to listen to you....believe me....I feel your pain everyday and I was passed off by quite a few doctors for over a year.  
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Avatar_f_tn
Hello there, for all those who have been diagnosed with kidney disorders: please get your children checked asap because kidney disorders are generally genetic. My grandma had very slight kidney problems leading to infections and I have kidney reflux but my daughter has kidney cancer. The doctors told me we were lucky to catch it on time. I don't want to scare people but you should be aware, it might save a life.
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Avatar_f_tn
Hi Katie
Im 23 years old and have been having UTI/kidney infections for since i can remember- untill a few weeks ago i have an ultrasound and it shows my right kidney is 7.5cm  and alot smaller than my left, i have a micturating cystogram done last monday which shows a reflux from my bladder to my right kidney. My kidney is scarred and damaged. I would ask for them to do xrays to find a reflux as mine is a birth defect which has now related to a damaged kidney. I had my daughter 2 years ago and knowing nothing about my kidney i had a horrific pregnancy and was induced early which now makes sense due to my condition.

I am struggling to find any adults who have primary reflux and worried about what will happen now as my urologist seems to be doing nothing for me and i keep getting infections.
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