Recently Diagnosed with Nephroptosis (floating kidney). Anyone else?

@jabrown0407, my mom had this when I was a small child. I've never met anyone else with the diagnosis. Her nephroptosis was discovered because of abdominal pain especially when she went from lying to standing. She had surgery to correct it. I remember being proud of nursing her to recovery after her surgery. 🙂

Most people with nephroptosis don't experience symptoms or require treatment luckily. Do you have symptoms? How was it discovered that you have nephroptosis?

@colleenyoung My journey to today is interesting. Certainly not average. In July 2022 I had severe abdominal pain, right over my appendix. I had two ER visits, then a vaginal sonogram where multiple female organ tumors were identified, measured, etc. Complete hysterectomy in Sept 2022 and 17 biopsies - amazingly all benign. Most of the hip girdle pain was gone with the exception of one pain from the bottom of my rib cage to my right upper abdomen. My surgeon wanted to believe it was adhesions. Pain goes away when I lay down. Classic Nephroptosis symptoms.

50+ years ago I was diagnosed with floating kidney and the pain was very mild. I was told to go live my life and most likely nothing else would ever happen. I had to give up downhill skiing and horseback riding but those was the only accommodations I made. Fast forward 50+ years I now have daily Level 5+ pain. I self-referred to a urologist. She cut to the chase and the recent IVP Images show the problem. I see another surgery on my horizon.

It is no longer taught in medical schools. It is not on Mayo website either. I recently had one doctor tell me that it was a misdiagnosis 50 years ago and there is no such problem.

I was hoping that someone else would be a little ahead of me on this path and I was hoping to find that connection.

So glad that your mom did so well and you have wonderful memories of your role in her recovery.

Hi there!
I was diagnosed around a year and a half ago, and due to quite painful symptoms, it affecting my availability to work, having to lie down multiple times a shift in public, embarrassing omg, I've had the surgery last week to fix it! I am in quite a bit of discomfort currently on day 6, but it has eased off swelling slightly past few days. I was just wondering if your mum could remember what recovery looked like for her, how long etc. They didn't give me any info at the hospital and I can't find many accounts online. Well done to ur mum and u 🙂 it's a weird ride to go on hahah

I'm waiting for the surgeon to make a decision if I am a candidate for a nephropexy. I have some kidney imaging scheduled for next week. I would love to fast forward to the decision but I guess I will have to wait. If I have the surgery it will be robotic. Was your surgery robotic? I suspect some of the pain is due to the invasive nature of procedure.
I had a robotic hysterectomy last year and I remember it took about 10-14 days before I could honestly say I was feeling better and could see the end of my pain.
I wish you a speedy and full recovery.

Hi! Got my fingers crossed for a decision soon for you. Yeah I had robotic assisted, at freeman's hospital in Newcastle. Thank you for your experience with the pain I just needed to know it was normal, day 7 and some hope is found hahah. The op took about 3.5 hours, fully successful they've said, got to go home the day after with some pain meds and advice to have at least 8 weeks off, Got a phone check up in 12 weeks. Thank you very much! I wish you a speedy decision and then recovery, floating kidneys unite x

Last May I started with a severe UTI that could not be cleared up for several months. The infection would almost clear up, then begin again. In August my primary doctor ordered ultrasound and then I was diagnosed with nephroptosis in both kidneys. I really had serious lower back pain during these months also. I was lucky enough to get with a Urologist in September. He ordered another ultrasound and MRI. He treated me with antibiotics again and the infection came right back. Next he put me on low dose antibiotics for 3 months. In a couple of weeks it will be time for another ultrasound and check up. After the first month of antibiotics, I began to really improve. I have had 2 months of virtually no pain with incontinence and it has been wonderful also to not have the run to the bathroom all day long and night too.
I have a long history of UTI's. I am now 75 and suffered for so many years. I do not know what will happen next, but I do expect improvement on next ultrasound. Also, I am not holding fluid like before. and when I pee I come close to emptying my bladder. Another Miracle !!
The inability to empty my bladder is apparently why I developed nephroptosis... I do not know what will happen when I get through with this 3 month antibiotic treatment--but I have my hopes my life will improve for my future.
This is such a painful condition to live with. I hope all of you will have a better future too.

@jjb1225 My understanding is that nephroptosis is a congenital condition you are born with and the "cause" is truly unknow. My searches of Dr Goggle assured me that they really don't know for sure and that little research is done on nephroptosis because it is rare and in most cases does not cause a problem.

I did want to clear up my mistake here. I was NOT diagnosed with nephroptosis .. I apologize for my memory also.
I did go and look up my records since your descriptions did seem a little "off" from my understanding of my condition.
My condition is called Hydronephrosis ..quite different from yours. Mine is a result of urine backing up into my kidneys causing swelling and "fluid around the kidneys".
I also apologize to the group for messing up this thread too.
Thanks, Margaret

No worries. What is most important is that you get the correct information for your situation. Possibly you should start a new thread on Hydronephrosis to see if there are others out there in Mayo Connect Land that can share their experiences. That is what I did and I believe it is worth it.

The Floating Kidney is rare and I just kept my fingers crossed - I did not expect more than two or three people to reply - but knowing there are others is a comfort in itself, even if the treatments are different. Most cases go undiagnosed because it often does not cause problems. The cases that do get diagnosed can take years while the patient has renal colic, pain and other symptoms that are non-specific.

Good idea, @jabrown0407

@jjb1225, if you would like to connect with and support others living with Hydronephrosis, check out this discussion:
- Hydronephrosis: Might there be an underlying issue? https://connect.mayoclinic.org/discussion/hydronephrosis/

There are other discussions too. Just use the new improved Search. 🙂