Early CKD Support
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Undiagnosed severe kidney pain

Hello,

I Have a very complex story but I will be as brief as possible. I have had undiagnosed pain in my back and during my periods for over 20 years in 2015 I was diagnosed with Endometriosis and I was told my uterus and bladder were adhered together and my gynecologist could not tell where one started in the other stopped. He told me I would need a hysterectomy to cure the Endo and help with my bladder otherwise I would need a difficult bladder reconstruction. I was in so much pain and I was so desperate for relief that I got a few opinions but decided to go ahead with it. Immediately after that surgery i was retaining urine and was misdiagnosed in the ER and continued to retain urine for several weeks until my pelvic pain specialist inserted a Foley catheter. During this time I was experiencing intense kidney Pain and could feel everything working. I would watch the urine come out into my bag after I experienced excruciating pain. In 2012 I had a tear from a stent from my kidney stone surgery so there's a small chance that could be what's causing all of this. My pain has got to the point where I can't do anything. I eventually had to learn how to self Cath. I had 8 UTIs within a year and no one had any answers for me. I decided to seek out and endometriosis specialist and have had 3 excision surgeries since my hysterectomy with endometriosis everywhere including my bladder and ureters. I've traveled several times because these doctors are very hard to come by. Now that all my endometriosis is supposedly gone I am still experiencing this intense kidney pain 50 plus times A-day and no one can give me any answers. I was diagnosed with retroperitoneal fibrosis after my last surgery in April at the Center for Endometriosis Care in Atlanta care in Atlanta and was then treated with high dose steroids in hopes to reduce inflammation around my ureter. We came to the conclusion that we're not sure that's what it is because the steroids did not help.I've obviously been monitoring my labs and my GFR and my creatinine have been going up-and-down ever since this has happened. The lowest my gfr has been is a 77 and the highest my creatinine has been is a point .98. I occasionly have protein in my urine but I constantly feel like I have a raging infection. Every time I go to the bathroom it's excruciating and every time my kidneys are working it's unbearable. I've had so many scans and labs and nothing ever shows. I did develop a stricture after my last surgery in Atlanta but that was fixed with a stent. I am absolutely desperate for answers as I can not continue in this much pain. I have 2 young kids in my life has been ruined by this. I should also mention that during ultrasounds I will feel my pain and I will mention it to the tech and then watch urine shoot out on the screen. I've had doctors tell me it scar tissue, there is nothing wrong, your kidney is perfectly fine, every excuse in the book. Any input would be highly appreciated. TIA!!!

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I'm sorry that you still have pain after consulting outstanding medical resources. If you haven't been in touch with the National Kidney Foundation, you might want to phone them They give some information over the phone.

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I have no answers, but I will keep you in my prayers. I hope you find relief soon.

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hi i think you need to search out a top specialist for your complicated case.look online for recomendations..iv had trasplant and know quite a lot ablut kidneys but not other complications .i wish you all the best take care ....chris

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