I can completely understand why you are frustrated. It seems like one to many doctors are telling you that they just don't know. Which can be very discouraging when they are suppose to be educating us about our problems, not the other way around.

I have no experience with this diagnoses, so I'm afraid that I can not be of much help. But, I hope that someone will be able to offer you some advice. Have they discussed the possibility of surgically removing the third kidney or, because they are fused, would it be to risky.

Even with these issues, you can still become pregnant. Have you seen a reproductive endocrinologist?

Sorry that I couldn't be of more help. But, we are always here to listen!

I can sort of relate to the 'frustration part'. I don't have 3 kidneys, but I did have an obstruction that caused alot of flank pain. They did surgery but I ended up losing function in that kidney. I am now in your position where they want to just wait and see. I have been to a urologist and they don't want to do any more. They won't refer me to a nephrologist either. I also have Diabetes 2. As long as the creatinine is within normal levels they won't do anything. I deal with the fatigue and pain too. Go ahead and vent. I hear you!!

Thank you so much for the support. Today is a better day but it means a lot to have somewhere to go when you get overwhelmed by it all. I try to put on a brave face for my friends, family, the world and even that gets exhausting at times. Thank you - thank you - thank you for allowing me to be less than strong for a moment. To answer your ?'s -

MC- You should know I have 2 amazing children (ages 5&9) and I've never had trouble getting PG. My issue has always been with carrying to term . Last yr. after another PG disappointment drs. investigated to find the bicornate uterus - they said my children were true miracle stories. In any case - the DX is what led them to research my kidneys. I guess there is a part of us that grows in utero thats called the mullerian ducts. They create the kidneys, ureters and the female uterus. If something goes wrong with the mullerian ducts during develpment - it is likely you will have a birth defects in all of the areas. I guess I'm living proof -

Re: surgery Believe me, as scary as it sounds a nephrectomy is an option in my book if it improves my quality of life. The fusion of the 2 does not make it anymore risky as far as I know - I believe the concern is - the "main" kidney on that side is severly damaged...I think the concern is how it would function alone if at all. My left side (the good side) is already only at 30%. I don't know which is the lesser of 2 evils and I think the docs. are playing the same guessing game - the 3rd kidney is the source of a lot of trouble - but without it...who knows?

Aflsh - It sounds like you were in similar circumstances re: surgery. Did they discover what was blocking the kidney? Did they discover what caused it to lose function post surgery? Do you know what the function is on your other side?

Wishing you both well...
Thank you - thank you - thank you again!!!!

Your welcome anytime. I can relate to how frustrating it can be. I too, have good days and bad. I have had several cystoscopies and it never shows anything. The same as you, my creatinine is within limits so they don't do anything. I was born with this defect, apparently, it was a kink in the ureter at the junction of the kidney. I don't know why they won't remove it when it doesn't function. Now it has at least 3 big cysts on it. I get tired as well. My other kidney always appears normal in every test. I hope everything works out for you. Keep in touch.

Hi. I was born with 1 kidney. I have an abnormality of the mullerian duct. Am missing my uterus completely, my left kidney, left ovaries, left tubes. Everything. Seems like the opposite of you. Am scared of the day I have any trouble with my kidney because I have no backup. I'm sorry you are going through this. It sounds painful and confusing. Stay strong though. I hope you feel better soon.

javatif:

Please read the question that I just posted about myself today....I can undestand and completely relate...

"I am a 39 yo female with the following urinary tract abnormalities, (per several specialists): Supernumerary fused right kidney, ectopic, lies in the iliac crest and pelvis, with 2 additional renal arteries. Kidney is malrotated -anteriorly, with a single ureter draping over the kidney and then "s" curving, almost a hard 90 degrees before entering the bladder.

My problems began 4 years ago when I went to my MD with what I thought was a pulled lower back muscle on my right side. Not so, he found anomaly and sent me to specialists. In the last 4 years I have had numerous UTI's, persistent flank pain, and passed several stones. MD's are very fascinated by the anomaly but cannot find issue with the kidney. Glad for that! However, one MD relieved pain somewhat. She believed pain was neuropathic pain and I now take a small daily dose of Nortriptyline. It has helped, but....

My question is this...Can the ureter in the position it is in and it's travel to the bladder cause some of my problems such as reflux, obstruction, UTI's, and pain??"

We are a rare few in which the answers are even rarer...

Thank God I just have lots of stones (30-50 inthe last 3 months) but the Dr's don't seem to know what is going on. I'm looking forward to Friday I have been sent to the nephrologist. I can't believe you haven't seen one yet. I think you should do what you have to to see one. What is the worst thing that can happen? He/She could say "I can't do anything" but you might get some answers? Your primary can give you a referal. Remember this is your health and the Dr's work for you if your not getting an answer get a new Dr. Make sure you have copies of all tests that have been done to take with you. Hope this helps.

By the way has any one heard of stones made of Protein and what couses them?

BTW Sarahi. I am passing stones out of both kidneys & my gallbladder. Real fun, only your calcium oxcolate stones will show up on any imaging device, protein stones are invisible.

I have been passing protein stones for 4 years this month, (20% of the stones were calcium oxolate & 80% protein, now its about 99% protein & 1% calcium oxcolate). I am wondering if the lithotripsy I had 5 years earlier had anything to do with my current problem. So far I have passed well over 400 stones, maybe 500, I stopped counting, its a nightmare. I would strip the liscense to practice medicine of 99% of the Drs I have seen. Out of the first 250 stones I passed 85% of them without pain medicine. I am living in a nightmare & most Drs dont even care, which makes me realize how stupid they all are. Bunch of crooks is you ask me. Evil crooks who should burn in hell. But thats beside the point, people should not have to suffer because of bad medicine & incompetant drs. I can show a dr a letter from another dr detailing his encounters with protein stones, as well as showing them the protein stones & after they tell me there is nothing they could do (bc it would require work & they are incompetent boobs)I wonder, so the last Dr i saw who saw the protein stone (that was analyized & confirmed by another dr & the letter of another dr who has some experience with them without having to see mine) I asked, having seen the stones & proof from another dr who know about stones, do you believe protein stones are real. The Dr said "I'm not really sure". Also there is a new machine made by siemens that can detect protein in the body, but it is very expensive & not a very common machine, have been trying to find out the name of it (the radiologist could only describe it to me) still trying to find out what its called. If I knew enough about other people passing these protein stones, I can figure out what causes them & how to fix them (have a few theories), but I dont know anyone who has any ? I guess I am just tired & needed to vent & let you know you are not alone & dont feel bad, you are right the Drs are worse then jerks. Hope you can find an answer. I will try my best to figure this out, I have no life, but passing stones, I need to communicate extensively with a few people who have the same thing b4 I can figure out why this is happening. Keep the faith & hope, dont give up. Peace, Love & Happiness - J