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Chronic Kidney Stones Doc's Don't take me seriously

I am a 25 yr old male who has suffered with kidney stones periodically throughout my life.  I passed my first kidney stone when I was 11 years old, and didn't really have a big problem until i hit my late teens.  The worst of it has been the last two years-soon after i was diagnosed with Ulcerative colitis. My first question is could these be related?  My other concearn is Doctors don't seem to be taking me seriously about the pain, I recently was admitted to the hospital for pain control...They did a CT scan that showed no blockage...only a 5 mm stone in the kidney..The doc told me i couldn't possibly be having pain unless there was a blockage and that he couldn't really continue treating me (despite a long history, blood in my urine and extreme pain) because the ct scan was neg for ureteral stones.  After a week and a half of periodic pain i passed a 3 mm stone and my pain has subsided.  What do I do?
43 Responses
198727 tn?1352057982
I am a 32 year old female.  I recently have come to the world of Kidney Stones.  I have been in pain for two weeks, with a 4 day hospital stay and 3 trips to the ER.  I went to my doctors today and he finally has said he is going to go in tomorrow and see what is there and remove anything he finds.  I feel so stupid and uneducated about what this really is and what does to a person.  I wish there was some way to make it all go away.  I feel for you and wish you the best of luck.  I am just now finding that the rest of my life I am always going to wonder when this is going to hurt again, and from the things I am seeing on the net it is very scarry.  And the even more scarry thing is...I think I may have passed my 3 mm stone today after I got home, but think I am not going to say anything so the doctor will still go in...just to make sure there are no more!
They really think we are crazy, and we really aren't in pain. What will the next 30+ years hold?  Again I wish you the best...and as they say "drink lots of water"?  All the best...Maria
Avatar universal
You could have had the 3mm stone in your pelvic area and it wouldn't have shown up on the CT scan.  My husband is 26 and passes stones constantly.  He has had to have 2 surgeries a year since 18 for stones to large to pass, and that doesn't include passable stones and the sand he passes all the time.  If you are recurringly getting stones you need to see a urologist for testing.  Sometimes its a thyroid issue, other times its metabolic.  My husband has 3 distinct problems with compound levels in his urine: too much calcium, too much uric acid and too little citrate (which is a stone inhibitor).  He is taking 8 pills a day for stones, but still passes them.  No one can seem to tell us a root cause.  They are only trying to help the symptom which is stone production.  Its been very frustrating.  

But if you have pain, and blood in your urine they should continue to treat the pain as the stone can be in a spot that is undetectable on a x-ray or ct.  Best of luck, drink not only plenty of fluids but specifically lemonade.  Not the fake type, make the real stuff.  The citrate levels and acid help prevent stones.
Avatar universal
I have had stones with no blood in the urine. They finaly figured out that even the small stones were causeing problems for me because I have 3 narrow places in my uiter. I have had alot of stones and there was always pain! If you dont like the drs keep looking... I had a stone stuck once in my right side, There was no blood in my urin and a ct scan didnt see it BUT i KNEW it was there and kept griping Until I found a dr who believed me. He did a IVP And saw a tini stone had gotten stuck. After a few weeks of trying to pass it he talked to a dr friend of his who was a specialist and asked him to look at my chart. The scedualed me for surgery and found out my fight side was narrow. I went through so many Drs who blamed everything from Woman problems to gas! I just kept looking until I found one who truely was wanting to help me and not some insureance hound. Keep looking and dont give up, And dont let anyone make you feel like your stupid!
Avatar universal
I was 1st diagnosed at age 17 & being female, stones just weren't in my demographic according to the doctors! It took YEARS & many hospitals & doctors. But I have a rare kidney disease & it is Medullary sponge kidney disease & now the physicians finally take my pain seriously & give me medication. I spent most of my life battling to be believed because they wanted to say stones don;'t hurt unless you're passing them or their in the uretor & this is not the truth. Mine hurt in my kidney too & I don't always have a blockage or blood in urine, to "prove" my pain. See a nephrologist & change urologists till you find a comptent one. Good Luck!
Avatar universal
Kindey Stones.. where do I start. I have been passing them for the last 15 years
I am a 52 yr old woman & have them in each kidney thats for sure.  My last KUB 4-22-09 report indicates 8 in my left kidney with the largest being just over an inch (11ml) and some smaller ones varying from 2 to 8ml.  In my right kidney the largest is 10ml and smaller varying in size. I have had 3 lithotripseys in the past. They are composed of calcium oxalate and the last stone analyzed in March 2009 was 3 diff composites. 70% calcium oxalate dihydrate..20% calcium oxalate monohydrate & 10% calcium phospahte carbonate.
The first one in 1997, then once about every 5 years or so.  My last one was in 2003. I have cystoscopies about 3 times a year where they go into the ureter and remove the stone. In 2007 I had a stone and ran a fever of 101 and was hosptialized for 5 days for sepsis due to the stone & a fever.  No one ever told me that having both at the same time was serious. I have a urologist & a kidney doctor. The kidney doctor is new because the urologist just doesn'rt seem concerned about the stones.  Im at my witts end, I have missed a lot of work due to stones and YES even if they are not in the ureter you can feel them.  I feel them in my kidneys when they move and feel pain in other parts of the body mostly flank/leg pain when they are on the move. In 2007 I had a record year I passed 7 stones in 1 year. In 2008 I beat my own record, 11 stones, this year I may also hit an all time hig as I have passed 5 already and Its only April. Its used to be one every 4-5 yeras now like every month.  I am currently taking potassium citrate in pill form 2x a day and HCTZ( hydroclorthalidone) water pill. I also have mitral valve prolapse and high blood pressure diagnosed 2 months after my first kidney stone passed in 1997.  I have been reading many message boards and feel am self educated about kidney stones by my own body. Each kidney stone is unique in severity of pain.  The bigger ones don't always have bigger pain. The largest I have passed was5 ml.  I just dont know what to do anymore.  Im tired of passing them, tired of being in pain, tired of missing work and could be in danger of loosing my job. The painkillers are great , but takes a day or so to get back into functioning mode after taking them. Motrin and asprin just dont help. I have been on low oxalte diets, low salt diets, and have had it. My body just cant take it anymore. I could sit here for hours with storys but just want to connect to others in my situation to see what they are doing and what is helping them. I read about parathyroid & kidney stones and have even had the sestembi scan that came back negative 2 years ago. IM tired of the drs, being poked & proded every month and numerous scans x rays and drs visits not to mention the copays the insurance doesnt pick up.  I live in Philadelphia and am open for suggestions, offers of advice. If I could go 6 months without a stone that would be a blessing.  
Avatar universal
I just had one yet again.. I ordered some pills called uriflow that help desolve them if you have on and helps keep them away.. Also if you take 400mg of magnesium supplements it has been proven to make stones not grow... A study was done on many people who had a few a mointh on the magnesium they didint have one as soon as they stopped taking it they returned.. hope this helps.. I ordered uriflow  from greenwillowtree.com  and heres the link for the study.. Gl
One hundred forty-nine patients with longstanding recurrent idiopathic calcium oxalate and mixed calcium oxalate/calcium phosphate renal stones received 100 mg of magnesium oxide 3 times a day and 10 mg of pyridoxine once a day for 4.5 to 6 years. The mean rate of stone formation fell by 92.3%, from 1.3 stones per patient per year prior to the study to 0.10 stones per patient per year during the study. No significant side effects occurred
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