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

[Kidneystoned55]

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?

[hatethemstones]

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

[weturner]

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.

[DoraK]

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!

[kimberlyfra]

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!

[kidneystones19136]

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.  

[shipit]

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

[Kandy1231]

I am 24 years old going to the Er like every 2 weeks. My reg doctor won't give me pain medication even tho I have a history of stones and was hospitalized in 2006. I am so sick of going to these doctors and getting nothing but them thinking I am addicted to pain killers. I have had every test done in the book the only thing they tell me is that my right kidney is enlarged significantly and they can't figure out why and my uiters are narrowing. I don't know what any of that means. All i know is that I have two children 5 years and 16 months who need their mommy and I am constantly feeling inadequate! My husband works from 6am to 6pm and than takes classes for his ASE from 7-11pm! I am always alone with little help and I really would like to get this under control and if nothing else at least get some relief! I have been told that I have very small like grains of sand in my kidneys and I can feel them! That may sound crazy but I can it drives me crazy! Someone please suggest something anything I can do...also please email me if you know of anything I can do!

***@****
Thanks,
Kandice  

[MSKshelly]

Many of us have stones that don't show up on test, IVP's etc. then pass them
later.  Like sick of stones, I have MSK.  There are some really great articles
on the pain even when their is no stone in the ureters, under the healthpages at the
top right side of this forum!

Just know you are not a lone...
Shelly

[Dr J Singh]

Hi,
Firstly, the patients of ulcerative colitis are definitely at an increased risk of developing renal stones due to hyperoxaluria (there’s an increased excretion of oxalate in urine) and you know that the most common kidney stones are calcium oxalate stones thus increasing the risk of these patients.
I didn’t like the attitude of your treating physician and he should definitely continue treating as you’re going through a genuine problem and it’s not a fake one. You need to take plenty of fluids and avoid foods which are rich in oxalate. For e.g. avoid nuts, beets, cola drinks, excess vitamin C containing foods and beverages, leafy greens and chocolate, tea etc.
I sincerely hope that helps. Please do keep me posted. Warm regards.

[eastmancrew]

Hello I just turned 31. I have suffered countless bladder infections for many years but no one ever investigated. My OBGYN just diagnosed me with a nervous bladder but I am not doing anything for it as my symptoms seem to have left for that. I was also hospitalized a few years back for a severe kidney infection and had two more since then with my latest problem being passing a very painfull 6mm kidney stone that got stuck at the end of its journey and caused intermittent pain for a week then finally popped out with a HUGE relief of this nagging pain that followed the 1/2 hr of severe pain. i have had many ct scans that show there are more in each kidney. I also collected my 6mm stone and took it to the doc so they could maybe figure this whole thing out. I keep hearing they are going to send me to a urologist but so far nothing has been done except i recieved a heavy dose of presc. meds in case another one decides to move out... lol
Shouldnt my docotor have gotten serious about this all by now... i heard all these things can cause damage to your kidneys.....

[gochoosy1]

MOST stones are from what we EAT!  MSG. NITRATES, soy protein, whey, just to name a few,  ALL ADDITIVES to make food last longer.  That is why you should eat FRESH FOOD, and really cut back on the protein. MILk, cheese, red meat, and soy.  Read the labels on what you buy.  Did you know that doritos are moslty just made out of preservatives? and TRIScuits, which you would think are healthy are full of MSG..As well as flavored rice a roni,hamburger helper mix, and the list goes on and on and on... BUY ORGANIC whenever you can and BUY things packaged in glass or cardboard, plastics are made of toxic chemicals.  Use glass and ceramic for all your cooking and eating.  If you use old plastic bottles to store juices or water, switch them to glass.  SUGAR may not have anything to do with stones, but it is also one of the worst things you can eat.  It ages every organ in your body it is hard to digest.  good luck

[ks552403]

First of all, I am crying after reading these postings. Thank you for sharing your stories!!! My urologist is currently telling me that it must be "female organs" responsible for my pain. I am 24 yrs old. I had my first 5mm stone at 19, which was broken up with lithotripsy (not well enough), because they had to redo the procedure to break it up again (after 5 days in the hospital with a blocked ureter). I have now made two visits to the ER with severe side pain and urinary urgency. A 3mm stone was found close to my bladder in the first CT scan. Since then, the pain has continued and my urologist cannot find any stones in my ureter through x-ray and IVP. He believes that the small stones in my kidney cannot be causing the pain and the stone in my ureter must be gone. He is now telling me to have my ovaries checked. I do not believe for one second that it is anything but a kidney stone. You ALL know the pain. It is the same as it has always been. I cannot continue to feel like I'm crazy and be treated like a "pain med seeker" in the ER. I don't know what to do next. I have a follow-up this week and I don't know what type of test to ask for/demand. Any suggestions are welcomed. Thank you so much for your posts. Finally, I do not feel alone. Should I try another Urologist? I cannot afford anymore useless x-rays!

Thanks,
Confused and worried...

[chemgl]

I am a 41/f that has a history of UTI's, kidney infections & kidney stones for about 20yrs. I have been hospitalized numberous times for pain management and stone removal.  Sometimes I have all they symptoms (nausea, frequent urination, burning sensation, fever, etc.) of a kidney infection or stones and sometimes I just get the pain and the nausea.  I have been hopsitalized for a few days to 2 1/2 weeks for my kidneys. I just had my right kidney cleaned out in Nov after being in pain for several months and two hospitalizations for pain management and now I just found out I have several new stones in that kidneys.  
I have seen Urologist, Endocrine drs, Renal drs and mulitple ER drs.  None of them can explain to why I keep getting kidney stones.  Some stones have caused major pain and others have sat in my kidneys for years with no problems.The drs have done every and any test possible from blood work to CT's to MRI's and they still can not figure out why I keep getting the stones.  The most recent test they did was a CT w/contrast to see if I had that sponge kidney disease. The test came back inconclusive. I know that the stones are made up of calcuim. All the blood work comes back with in normal limits.
I am currently in so much pain because of these stones it is driving me crazy. The ER drs and the others are looking at me and telling me that I am drug seeking, which I am not. I currently have several stones in each of my kidneys but they say that because they are not blocking and are so small that they can't be the cause of my pain. I don't have any other symptoms at this time besides the massive pain and the nausea, that they are saying it is not my kidneys and they won't give me anymore then a day or two worth of pain meds. I am in so much pain, that it brings me to tears and crying.  The recent ER dr said I have a back problem and not a kidney problem.  He checked to see if I could stretch (and I could) and the pain doesn't radiate to anywhere. It is just a sharp stabbing pain in my right kidney. I am so afraid of taking pain meds that I might get addicted to them, that I only take them when I can't stand the pain anymore. I know that doesn't help my situation either.  Do you have any suggestions that my doctors haven't told me?

Thanks,

[CANDYGIRL85]

im 24 years old i had my first stone when I was 15. and have had 300 since then I produce 3 types of stones so the drs can not help me  they can only do surgery when its needed. Ive had over 22 surgeries on my kidneys. the best way to get help for the pain from chronic stones is to find a pain management doctor they are wonderful and that's what they do best. So if your struggling with other doctors thinking your addict find a doctor who specializes in pain believe me it will change your life.

[sleepytea]

If it helps, I suggest going to sites with doctor reviews and ratings, or the "Suggest a doctor" places.  That is how I FINALLY found a doctor who will listen and believe me.  Consider the searches in you your quest for a decent doctor!  And if you find a good one, please let others know!

[museumsiren]

First off ((((HUGS)))) for your trouble. I imagine it's slightly worse for guys because you have an extra organ for those to go through. I know exactly how you feel when the doctors say "It's not moving so it shouldn't be hurting." Well it IS hurting sunshine, so thanks much. The others are 100% correct about the CT scans not showing all possible stones. Next time you have to go in demand an ultrasound. I got so lucky with one of my last visits because the doc said "CT only shows one small stone in your right kidney but I can see the pain you're in so I'm doing an ultrasound." Viola! SIX stones in my right kidney and 2 in my left, plus one moving. When I say DEMAND an ultrasound I mean it. Just try to remember that ER and Urgent Care docs are SO overwhelmed and it's really nothing personal against you. So many times I've hit the ER and it "looked" dead but they had ONE doc and three gunshot wounds that I couldn't see. I know when you're in pain the last thing you want to do is feel sorry for the doctors but believe me when I say it really actually helps alot when you remember what they're dealing with. Remember, waiting is good and getting sent home is good because it means you're not going to die.

I hope you get some REAL answers very soon hon!

[sevenoctober]

did UltraSound can help to detect kidney stones?

i've just completed the ureteral stent removal for the final step of kidney stone treatment.
really had a hard time for the past 1 month.. i feel so bad to cause a trouble to my family: they have to take leave to send me to hospital, they have to use their money for treatment that was exceed my insurance allowance.
i can say, from the passing kidney stones until the removal of stent, i was suffer so much!
=(

[surfwalkers]

I am a 62 year old male and have had persistent CAOX kidney stones since I was 22.  That is 40 years of kidney stones.  I have learned to live with them and have seen the same doctor all those years.  I now have two stones, one in each kidney and both are >9mm.  I hurt all the time but my doctor says that there is no hydronephrosis and the stones are in a position of the kidney where I should not be having pain.  Well guess what?  I do have pain and I am sure it is from the stone.

I have used pain killers all my life and have never had a problem with addiction, however that seems to consume my doctor's thinking and he is very reluctant to provide me with what gives relief.  I feel for all of you who have this same problem.  It is hard enough to deal with it...and then have to have the added guilt trip of being made to feel like it is all in your head and you just want the meds.  I think I would rather deal with the pain as to have to deal with the feeling that someone who knows your history and knows your past....now doubts your integrity.

An old man with stones....forever

[Momofpatients]

My daughter is 16.  I've taken her to the ER 3 times and she has been hospitalized twice in the last month.  They finally diagnosed her with FOS - Full of Stool.  The stones show on the Ultrasound (5 mm in each kidney plus small ones) but not on IVP or CT.  They sent her home with stool softener.  Last night she had severe pain and passed another stone.  It is so frustrating.  They wanted to do a full GYN exam, which I refused and gave her a full sex education class, but did not resolve her problem.  I am very angry.

My other daughter is 26 and has had them since she was 14.  So I have been down this road before.

[notamedseeker]

Oh my, I feel your pain!  Like the rest of you, I was so happy to see these posts to see that I am not alone as a chronic stone maker.  After passing a 4mm stone last week, I continued to feel pain in my left kidney so went to see my Dr., who sent for a KUB.  Three days later, I passed another 4mm stone.  I had still not heard back from my doctor about my KUB at this point so i phoned his office to see what the x-ray had to say about how many more stones I could anticipate in the near future.  When I talked to my doctor, he said that he had not called me with the x-ray report because there was nothing to tell.  I told him that I had passed another stone within a few days of the x-ray - clearly this stone did not form in three days.  He said that perhaps the stone had been hidden from view.  Like many of you, I know when I have stones in the kidneys.  The pain is not as intense as it is when the stone is in the ureter, but none the less, stops me from continuing my daily routines at times.  Doctors who do not believe our pain, and who think we are pain med seekers, should all be wished a big stone of their own.

[Snick61]

I am a 49 year old female..I have had kidney stones removed 4 time in the past 6 months..Now I have 2 small ones in my right kidney..My urologist says that they can't possibly be causing my pain..He refuses to give me pain meds and asked me to seek help from my primary care doctor..He suggusted I too had a cyst on my right ovary..Which by the way is impossible as I had that removed last year..UMMM ..ow what do I do?..I am in constant pain!!!!

[Kewi90]

I'm glad I'm not the only one dealing with this. I'm 21/F and have been aware of my stone issue since Jan 2010. At that point I found out I had a 2.5 CM stone in my left kidney, along with several 6-9mm stones. I had two laser lithotripsy procedures to have them removed, however, they realized my anatomy was different and they were unable to get the scope low enough in the kidney to retrieve the stones. At my last CT I still had (2) 5mm and a 8mm stone in the lower pole, along with a 2 mm stone in the right. I went to the ER with a kidney infection, at which point he told me I was crazy and gave me a pamphlet on sciatica pain (Claiming I had no infection, and that kidney stones don't cause pain in the kidney, only in the ureter) Well, 2 days later I passed the 2 mm stone and my culture came back with E coli proving the kidney infection. I still have chronic pain, but it seems that it has lessened with a prophylactic antibiotic i'm on for my frequent infections. I spoke to my primary care doctor (the only one who believes my pain .. unlike my kidney specialist) and she said that stones harbor bacteria and this bacteria may be irritating my kidneys and causing the pain. Therefor the antibiotic may actually be helping my pain on the side. She also made a suggestion of yoga. I haven't done this myself yet, but it can be found online by searching "yoga for kidney stones" I'm on a diuretic that is supposed to help reabsorb calcium into my bloodstream, as it's just being lost in the kidney .. still no luck as I passed a stone a month ago, and a lot of "gravel" a week or so before that .. and now just passed a 2mm stone today.. ARGGHH! Where are they coming from if they weren't on the last scans?!? :(

[StudentNurseAndrea]

You should talk to your doc about having your parathyroid hormone (PTH) levels and calcium levels tested. If your PTH levels are too high, called hyperparathyroidism, this could account for your chronic kidney stones.
Also, I too have had stones since early adolescence. I usually get at least one every summer, so I know the pain, and I know when I am experiencing one. However, they do not always show up on scans, IVPs, etc. Also, they do not have to be causing an actual obstruction in order to cause pain. If the stone shifts, moves, or travels, with or without obstruction, you will be in excruciating pain! It is not fair to you to be written off by the doctors. If I were you, I would find another urologist, and even see an endocrinologist for a hormone workup.
Good luck to you! Hope you feel better and find an answer soon!

[mskdsufferer]

I am so tired of going to the E.R. and no doctor believes me.  Blood in the urine, severe pain and the doctors think I am in there just for pain meds.  I have Medullary Sponge Kidney Disease along with Pulmonary Hypertension and Right Sided Heart Failure.  I wish the doctors could live one week as me and then tell me I am imagining the pain.  There should be no pain without a stone blocking the urine- they tell me.  Well guess what, I am hurting now and you cannot find a stone.