Understanding Nephroptosis: Seeking Guidance
Greetings to both medical professionals and readers, I am a 32-year-old woman, tall and slim at 185 cm, who has recently received a diagnosis of asymmetrical nephroptosis confirmed via ultrasound. This condition is visibly apparent on my abdomen when I am upright, and I endure persistent pain on my right side, particularly when I remain seated or stand for extended periods. Carrying my children for more than ten minutes leaves me feeling dizzy, profusely sweating, and exhausted, accompanied by discomfort in my kidney area. On certain days, I notice that my kidney feels firmer, intensifying the pain I experience. There was a week where I struggled with ongoing nausea, fatigue, and abdominal discomfort, but thankfully, my symptoms have since returned to what I consider my “normal.” The surgeon overseeing my case currently believes that surgery is unlikely to alleviate my symptoms. However, I remain optimistic that it would help by relocating the kidney away from my abdominal region, thus preventing it from being compressed by my ribs when I sit and offering better protection when positioned correctly. I have several inquiries that I hope you can assist me with: 1. Are my symptoms insufficiently severe to warrant surgical intervention? 2. If someone supports the idea of surgery, could you please provide references to reputable articles? 3. Is it common for the kidney to be visible on the abdomen? 4. A CT scan was performed to evaluate the ureter leading from the kidney to my bladder, but it was conducted while I was lying down. This poses a concern since my kidney repositions itself when I am supine (as confirmed by ultrasound). How can this evaluation accurately reflect tube function while standing? I have many more questions regarding my condition and welcome the opportunity to provide any additional information needed. Thank you for taking the time to hear about my persistent kidney issues. **Medical History** - Diagnosed with Attention Deficit Disorder (ADD) and prescribed Elvanse (30 mg). - I paused my Elvanse intake during the week when I experienced unusual symptoms, which did not change my condition. - I have hypermobility and have dealt with an ectopic kidney since my first pregnancy three years ago. - My kidney-related pain has intensified since the fall of 2025.
Answers (1)
2/4/2026, 7:50:47 PM
OpenHealth AI
Thank you for sharing your concerns regarding nephroptosis and the challenges you're experiencing. Your symptoms and their impact on your daily life are significant, and it's understandable that you're seeking clarity and support.
Main Points:
- Your symptoms might not currently meet surgical criteria, but it's important to explore options.
- References and information on surgical perspectives may help in discussions with your healthcare team.
- It is not common for a kidney to be visibly protruding, and this could indicate a more severe case.
- Evaluating kidney function while lying down limits its assessment.
Explanation:
Nephroptosis, or floating kidney, occurs when your kidney is not held in place securely and may move more than normal, especially when you change positions. The visible aspect you describe is a common occurrence in those with this condition but may indicate some mechanical issues leading to pain and discomfort.
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Surgical Intervention: Surgery for nephroptosis is typically reserved for cases where the symptoms are significantly affecting quality of life and there are no other underlying issues. Your surgeon likely considers visual examination, physical symptoms, and response to conservative treatments when determining this.
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Supporting Research: For discovering literature regarding the efficacy of surgical versus non-surgical options for nephroptosis, a few reputable sources include:
- Articles from the Journal of Urology and The Urologic Clinics of North America can provide insights.
- Reaching out to academic libraries or using databases like PubMed can also yield relevant studies and reviews.
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Kidney Visibility: While some people may notice their kidneys visually due to body structure or conditions like nephroptosis, this is not typical. The firmness and pain you're feeling during certain postures should certainly be monitored.
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Evaluation Concerns: A CT scan while lying down may not adequately reflect how well the kidney and ureter function when you are upright, as position changes can significantly affect kidney mobility and function. A renal ultrasound in an upright position or during dynamic imaging might provide a better picture.
Next Steps:
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Symptom Monitoring: Keep a detailed log of your symptoms, especially noting activities that exacerbate your pain, which can be valuable during discussions with your healthcare team.
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Discuss Options: Engage with your surgeon about the reasons behind their surgical recommendation and the potential benefits of a second opinion from a urologist specializing in nephroptosis.
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Physical Adjustments: Consider adjusting activities to reduce discomfort, such as avoiding lifting for extended periods and engaging in supportive exercises for your core to support your abdominal structure.
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Future Imaging: Ask your healthcare team about the possibility of obtaining further imaging while in an upright position if concerns about ureter function persist.
Please continue to communicate openly with your healthcare team regarding your symptoms and concerns. Your health is a priority, and seeking clarity on these issues is essential. Let me know if there are specific questions you have or if you need further resources.
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