A lot of blood in urine and diagnosed with rare kidney disease

I had the same problem with a lot of blood in my urine,let me tell you the Doctors I went to see accused me of cutting myself in order to get pain pills,it was a long 2yrs.I then searched the internet n finally found a lady who had the same symptoms I had,she then said she said she went to a Dotor in Columbus Ohio Dr.Ler Hebert n got a kidney Biopsy. I then got a call from the Doctor n was told that I have a rare kidney syndrome n that there are only a few of us that has this Bleeding swelling kidney n there isn't anything that can do for this Bleeding Kidney.I was told that the pressure to my cappalleri would burst into my Kidney n that it would cause mini Crystals too enter the Kidney causing it to bleed,similar to having kidney stones. I have had this for many years n a lot of therapy to have to deal with pretty much having permanent kidney stones.Its hard to handle a diagnosis like that especially when there's no cure.So to the lady with the right Kidney bleeding mine is my left You need a kidney Biopsy to be Diagnosed..Goid Luck

Hello, guest.

The condition you're describing, where the capillaries in the kidneys burst and cause bleeding, leading to crystal formation similar to kidney stones, is indeed complex and sounds quite painful. It's a testament to your perseverance that you continued to seek answers despite the initial misinterpretations of your symptoms by healthcare professionals.

For the individual you're advising, your experience underscores a few important points:

Seeking a Second Opinion: If someone is experiencing unexplained symptoms and is not getting satisfactory explanations or relief from their current healthcare providers, seeking a second opinion or consulting a specialist is often a good course of action.
Importance of Accurate Diagnosis: Conditions like yours, which are rare and not well-understood, highlight the importance of thorough diagnostic processes, including tests like a kidney biopsy, which can provide crucial insights into kidney health.
Living with Chronic Conditions: Your experience also speaks to the challenges of living with a chronic, potentially incurable condition. It often requires not only physical treatment but also psychological support to manage the ongoing stress and impact on quality of life.
Advocacy and Research: Being an advocate for your own health, as you have been, and doing your own research to find similar cases or specialists with relevant experience can be vital in the journey to getting the right diagnosis and management plan.
Support and Understanding: Finally, your story is a reminder of the importance of empathy, understanding, and support from both medical professionals and peers. Connecting with others who have similar experiences can be invaluable.

Thank you for sharing your experience. It's a powerful reminder of the importance of persistence and advocacy in healthcare, and your advice could be very helpful to others facing similar challenges.