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Nephroptosis Floating Kidney Join this Group

Does anyone find themselves in a similar situation?

By September 16, 2012 - 5:13pm

I am so glad to have found this site, I noticed that I was losing weight, having bouts of nausea and a burning sensation in the front right/side. I found a lump that moved about descending from my ribcage to right about my belly button. Location depending upon my position. There are days where my right flank is absolutely on fire as well as the right front below my rib cage. The handfuls of Motrin, Tylenol, Alieve are not even touching the pain. Eating is not something that goes well with pain and I have nausea especially in the morning when I stand upright, right after getting out of bed. MRI, CT all showed nothing but gallstones and kidney cysts because I was laying on my back, so feeling like my Dr felt I was a nutcase (even though my ob/gyn felt the lump as well as my primary doctor, not to mention it grosses out my husband) he luckily ordered an ultrasound of my liver and gallbladder due to the nausea. During the ultrasound I turned on my side out popped the lump right next to my belly button - large lump -and the ultrasound tech saw it too! She got photos of it!! Finally something to prove Im not crazy!!!! Only problem I seem to have now is that "because this is so rare" (so I am told) the docs still dont quite know what to do or believe that this could possibly be causing me pain!! By the end of my work day I am in so much pain that all I want to do is come home and lay down. (I have 3 children) My weight is down from 130 to 115 (very slim for my height) and I have been making an effort to put weight on by drinking ensure shakes and trying to eat more! I had a hysterectomy in 2007 and had quite a lot of ovarian cyst and endometriosis prior to that. I am curious if anyone could let me know how your story if you had surgery and how it turned out or how you found a qualified physician since doctors dont seem to be very schooled in this as I am being told "its rare" and "just not common". I live in an area with very specialized high quality hospitals so I am sure I will find a doc but right now, I am going into 6 months just to get to a diagnosis point.

By October 2, 2012 - 9:58pm

I found a wonderful urological surgeon and he saw me and sent me straight to the hospital for an IVP after he instructed them on how the test needed to be performed to catch my kidney moving. It turns out my kidney drops three inches when I stand and folds over. That explains my pain and the lump in my abdomen. I am scheduled for surgery on october 24th!!! I have never been more excited to have surgery in my life!!

October 2, 2012 - 9:58pm
By September 17, 2012 - 8:53pm

Thank you, I sure hope so, it's helpful to hear and share similar stories.

September 17, 2012 - 8:53pm
EmpowHER Guest
By Anonymous September 17, 2012 - 6:42pm
Hi hoonen, Welcome to EmpowHER. Thanks for sharing your story, here you will find answers and support from others with the same condition. Best, DaisySeptember 17, 2012 - 6:42pm

Group Leader


Discussions about the struggles of living with, dealing with, trying to get a diagnosis and treatment as well as surgical intervention surrounding Nephroptosis a/k/a Floating Kidney or Prolapse Kidney.


St. Louis, Missouri


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