Severe kidney pain, no diagnosis

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ntalbot20
New Member


Date Joined May 2016
Total Posts : 2
   Posted 5/16/2016 9:55 AM (GMT -7)   
Hoping for some advice.....I have a very complex history, but I'll try to be brief. I did have a right ureter tear back in 2012 after a ureteroscopy where they never found the stone and thought it could be embedded in my kidney.....I first did lithotripsy which didn't work then a ureteroscopy where he didn't find the stone. I returned to ER a week after surgery with hydronephrosis and was referred to a different doc. He did another ureteroscopy and couldn't find the stone but found the tear. I had a diagnostic laparoscopy in June 2015-local gynecologist found severe adhesions and endometriosis. My Bladder and Uterus were adhered together and to my pelvic wall, he left it alone bc it was out of his skill level. At my follow-up, he recommends full hysterectomy bc of bladder issue and endo. I got a 2nd opinion from a gynecological oncologist and he recommended the same but to leave my left ovary bc my pain was on the right and I was 31. They teamed up together to do my hysterectomy and remove my bladder from my uterus on Aug 31, 2015. 4 weeks after I was in ER with increased pain. I was misdiagnosed and sent home with a BV diagnosis. A week later I found out they had drained over a liter of urine out of my bladder and I had been retaining urine since my surgery. My pelvic pain spec. drained another liter out and I left there with a foley. I did several bladder trials and would end up needing a foley each time until they taught me how to self cath. When I had the foley in, I could feel everything working(severe pain) and I'd watch the urine come out into my bag. My retention seems to be resolved but I've had chronic UTI's and severe right kidney pain since my hysterectomy. In and out of docs, ER's, test after test. Nothing! There was nothing wrong they told me. I was desperate and sought out help from a support group. I traveled to Utah on Feb 11, 2016 and had Complete excision with an endometriosis specialist and left ureterolysis due to a mass growing on my vaginal cuff. I had a ton of missed endo, but it was primarily on my left side. My right side pain is still there and I can feel everything working, it feels like I'm passing a kidney stone several times a day. I've had 3+ cultures since my excision and 6+ cultures since my hysterectomy last year. I've been on many different antibiotics and I'm now on one continuously, but at times, my infection gets severe enough to produce a positive culture even while I'm on the antibiotic. 5 of the cultures grew e-coli and 1 grew pseudomonas aeruginosa and enterococcus species. I've seen several urogynes and urologists. No one has an explanation. I asked my current urologist to do another IVP but he said no and wanted me to get another CT instead, which showed nothing as usual and that was my 6th one in a year. He now wants to do a selective urine culture(places a small catheter in each kidney and bladder and sends off separate cultures and a diag. ureteroscopy. I'm so worried about another surgery, but I can't continue living with these infections and pain. My family members are just done dealing with this and think another surgery is crazy. I just want to be put out of my misery and no one understands! I finally saw a nephrologist and she recommended a 24 hour culture which only showed high PH. I have urgency, frequency, severe pain, radiating pain, pressure, burning, lot of tissue in urine and sometimes my urine is very cloudy. I always go in a hat and every time I have tiny crystals floating on the top and tissue.

I think one of two things is going on.....1. I obviously form a lot of scar tissue. I could have a stricture from where my tear was years ago....Or 2. They caused some kind of damage to my bladder when they removed it from my uterus during my hysterectomy or there was damage caused by me retaining urine right after surgery and my huge bladder was pressing on all my wounds that were trying to heal. These are just things, I've come up with.

I've always had a dull pain in my kidney since my surgeries in 2012 that would get worse with my period, but it was never this severe until after my hysterectomy. I can't find a doc that seems to take me seriously. I do see a pain management doc and take Dilaudid for the pain, but at times, it doesn't even touch it.

I apologize this is so long! Has anyone gone through anything similar? I'm feeling desperate so any advice would be appreciated. TIA!

Nicole cry

Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 296
   Posted 5/16/2016 12:42 PM (GMT -7)   
Hi Nicole. So sorry to hear about your situation. I have never encountered anything like that. I guess I am "fortunate" to just have a very small lesion on one of my kidneys that I will have removed during through robotic surgery in June.

You mentioned you went to Utah to see a doctor. If I might ask, are you from anywhere on the West Coast? If so, there are fantastic urologists/nephrologists at Stanford University, where I was fortunate enough to get a referral from my insurance provider. I can give you the name of the doc I saw there if you would like. Very caring and seems to be quite good at what he does.

ntalbot20
New Member


Date Joined May 2016
Total Posts : 2
   Posted 5/16/2016 6:21 PM (GMT -7)   
Thanks for your response and for reading my novel! I'm in Colorado.

Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 296
   Posted 5/16/2016 6:48 PM (GMT -7)   
Might be a little far to come to Stanford. But if you do, Dr. Harcharan Gill is part of the urologic oncology group. He had been monitoring a lesion on my right kidney for about 2-1/2 years. It was small when we started, only 15mm, so he suggested monitoring. For about a year and a half, there was little to no change, but this last time, it went from 17mm to 20mm, so he suggested treating it. He referred me to a robotic surgeon (also at Stanford) and I got for the surgery on June 22nd.

I wish you good fortune in finding someone that can figure out what's going on and put your mind at ease.
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