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Chronic Kidney Stones Doc's Don't take me seriously
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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?
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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
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Avatar_n_tn
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.
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Avatar_n_tn
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!
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Avatar_f_tn
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!
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Avatar_n_tn
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.  
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Avatar_m_tn
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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907402_tn?1242515174
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  
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489228_tn?1291535054
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
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Avatar_dr_m_tn
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.
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Avatar_n_tn
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.....
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483623_tn?1256097169
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
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Avatar_f_tn
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...
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Avatar_f_tn
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,
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1170366_tn?1263923079
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.
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Avatar_n_tn
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!
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1262055_tn?1269846971
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!
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1260859_tn?1269748084
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!
=(
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Avatar_m_tn
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
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Avatar_m_tn
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.
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Avatar_m_tn
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.
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Avatar_f_tn
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!!!!
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Avatar_f_tn
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?!? :(
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1668236_tn?1308160026
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!
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Avatar_f_tn
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.  
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Avatar_n_tn
Hello my name is Cindy  I am from Canada,  i feel your pain and frustration , i have Crohns disease and   leaky heart valves, Heart failure and high blood pressure Iam 44 yrs old and i have similar problems i currently have kidney stones 4 and , i go to ER  and sometimes the Drs also  think i am a drug seekers as they do to all people. they are really Jaded and feel everyone  is on drugs. all I can say is to keep telling them that something is wrong if thats the truth , someone will believe you. is not a great position to be in i know .  and hang in there , hopefully things will get better for you.  take care , ps u can email if you want  to chat more  at ***@****
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Avatar_n_tn
Firstly I feel for each and everyone of you and my heart goes out to you all. I can so understand the distress when a dr says there is nothing yet your body says something completely different.
Going back a few months I had the worst pain ever which matched a very similar pain less than a few months before that. I went to the ER where on an x-ray showed what they said was two stones. I then this is the first time around had a CT scan and although these two apparent stones showed up on the scan the radiographer said he thought it was just scarring and as it happened the pain diminished and I was sent home.
A few months later severe pain is back so back I go to the ER see another Dr have an x-ray same original diagnosis after an x-ray kidney stones, yet when they pull my medical records and read what this idiot radiographer had written again without any further test they say scarring along with you don't have kidney stones and you never have and send me home still in pain.
so a few weeks back I am out of town symptoms reoccur to the point I wished someone would shoot me to put me out of my misery and get to the point after continuos vomiting end up back in the ER only this time completely different area. They say have you ever had kidney stones I say no this is what I've been so rudely told right?? They then send me for an x-ray and say it's two stones in the ureter exactly the same as before. This time however they do a CT scan and even before I got on the table the radiographer says it's probably just a bit of gristle yeh like is he physic ??? I said well I have a lot of blood in my urine. He then does the scan and proceeds to tell me everything about kidney stones! quite knowledgeable actually ( just can't read scans right)
So the next day the consultant comes around and says to me what the radiologist/radiographer says and yes you've guessed it's gristle!!! however the chief surgeon says well if it sounds like a horse eats like a horse and looks like a horse it probably is a horse so with that chooses to believe I have two stones in the ureter. He then says well keep you well medicated for your pain and it's best to let them pass naturally. his under study so to speak said yes I will look after you.
The next day it just got worse and his under study comes to my bed and says we have decided to put a  stent in. Somehow I got the feeling this guy was going with the radiologist/radiographers diagnosis and he would be able to prove it by doing extra tests that he failed to inform me of when signing the consent forms.
So off I go to surgery and he uses a cystoscope which is a camera and does a dye test to see how the urine flows down from my kidneys. If the dye goes where it should no stones no need for a stent.
The next day he comes around with his boss who informs me about using the dye and says!! the dye test shows conclusively that you have two stones in our ureter that have caused a blockage and your kidney are backing up which is dangerous. They inserted a stent.

So all this time I did in fact have kidney stones and all these other Drs got it so very wrong to a point that it was causing damage to my kidneys and have had to go through excessive needless pain just based on their opinion and not on more tests. It would seem that the Dye test is the definitive answer on showing an obstruction in the ureter and therefore I think if the patient continues to complain that this dye test should be carried out. I am very angry with this whole affair.

I have to keep this stent in for 6 weeks then I go back and they will break up and get what ever is left. oh BTW the stent is not pleasant especially when I pass water it hurts more than the stones but at least I will finally know that there will finally be an end, well at least to this episode



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Avatar_n_tn
one last thing although in the hospital where they got to the bottom of this even where there was perhaps original doubt by one or two Drs they did make sure that I had more than adequate pain relief in their favour and sent me home after placing the stent with morphine and other pain relieving drugs so I can't fault them in that area
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Avatar_f_tn
Welcome to my world of Kidney Stones. I have suffered with Severe Kidney Disease since I was 13 naturally misdiagnosed. Then numerous kidney stones. That alot of time do NOT show up in CT scans depending on were there at. Well I just passed mine today that has been bothering me for 9 days. I don't know if there is more to com. So as far as Doctors go don't believe a word they say. You know your body. I have been told it was in my mind until I brought the stones to these idots. It is horrible way and no one should have to suffer with any kind of pain like this. Good luck my journey has been 35 years of hell. My stones are not from anything I eat its the disease. But stay away from alot of dairy products. And the 3 no are caffeine,spinach,and chocolate.. Remember the 3 no's I hope this helps keep in touch Brenda
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Avatar_f_tn
Welcome to my world of Kidney Stones. I have suffered with Severe Kidney Disease since I was 13 naturally misdiagnosed. Then numerous kidney stones. That alot of time do NOT show up in CT scans depending on were there at. Well I just passed mine today that has been bothering me for 9 days. I don't know if there is more to com. So as far as Doctors go don't believe a word they say. You know your body. I have been told it was in my mind until I brought the stones to these idots. It is horrible way and no one should have to suffer with any kind of pain like this. Good luck my journey has been 35 years of hell. My stones are not from anything I eat its the disease. But stay away from alot of dairy products. And the 3 no are caffeine,spinach,and chocolate.. Remember the 3 no's I hope this helps keep in touch Brenda
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Avatar_f_tn
that is right it does not show in your pelvic area. out of 35 years I have been told no. Sometimes the find them.Then come home and the neighbors hear me screaming.. So you are very true on that note
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Avatar_f_tn
I suffer like you. The only thing to try to slow it down is 3 NO's no caffeine,chocolate,spinach.. These 3 mess up the filteration in your kidneys. But I have been 35 years of hell with this and the Doctors do not know what they are talking about. Have had many surgerys. And a very bad one that they practiced something on me that damaged my right kidney and the disease went into my left. So believe me know you body stand up to the Doctors. I had some of the best in the World and they ruined me. Take the pain Meds only when you know its coming on. But don't wait until pain is out of control. Then you will vomit and condition gets worse. When I have time I can talk to you more about this. But welcome to my world of diagnosing myself. Hope this helps. Don't wait tell you Doctor and demand..........
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Avatar_f_tn
I am a 42yr woman, I had my first experience with kidney stones in Dec. 2009, (missed Christmas because of it) I never caught it, the Dr did a Retrograde and nothing. No stone to be found. I just had a abd ultra sound, it showed a 7mm stone, 2 weeks later still pain and now the xray and ultra sound shows nothing. Finally they did a ct scan and they found a 3 mm stone lower in the ureter. Now I had another xray today 4 weeks later and of course the stone does not show up. I feel crazy and like  the Dr thinks I'm not telling the truth. I know what kidney stone pain feels like, it is not constant  and I have pain that can come for about 4 hrs off and on, then nothing for 8 hrs. I have changed my Dr. to a more proactive Dr. but at this point they just want to wait a month and see what happens. I would like nothing more than to pass the stone so I don't like I am crazy. I think that some Dr think that you are just looking for pain meds (that I never asked for and never got from the Urologist) not to mention they never help anyway it may take the edge off but never gets rid of the pain. So while I still am in pain I am waiting  for my month to go by and see the Dr again.

lost for words
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Avatar_f_tn
welcome to my world.   Both of my kidneys are full right now and I have had surgeries in the past to unblock one of my kidneys because one was stuck, almost lost that one... NOW they are stay nothing is blocked, they are all passable, they are not causing you no pain..hmmm.. well, my daughter gave me a pain pill because they would give me nothing and I ended back up in er w/ high blood pressure (which I think caused from pain) and they drug tested me and now I have been reported to my family doc and powers that be.. and still they say all of your stones are still in kidneys and passable AND THEY ARE CAUSING YOU NO PAIN... I have had stones for 30 years..  I feel at this point I am screwed...  btw I am 60 years old...
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Avatar_m_tn
I am a 17 year old girl, and have passed several stone but have yet to 'catch' any of them. I've been hospitalized for them twice, once a couple years ago and once just in march. At first, I was going to a pediatrician because i was only about 14-15, and the only answer he gave me was 'its in your head. ' or 'youre eating too much/the wrong stuff'. Then, a knot started to sort of 'poke-out' of my stomach/side around the kidney area. He told me that there was nothing there. So, i got tired of being in pain every day and went to a family care dr just recently. Shes one of the best dr.'s ive been too yet, and shes trying to figure out whats wrong (kidney stones, i told her) So i have a CT scan and a urine test. The CT scan shows that i have a massive, 2.5 CM kidney stone in my left kidney, and she sends me to a urologist. This guy is ridiculous and looked high as a kite because of lack of sleep and all he says is 'im sending you for an IVP.' And I had to ask him about the stone, and he says 'the radiology read it wrong, there is no stone just a shadow. The person that read it was probably very sleepy.' Hmm.. So i have my IVP done and the lady that done it said to call him that following thursday because he would have it by then. However, the pain subsided and we got very busy moving into a new house and 2 weeks went by and he had never called, so we have to call him for him to tell me there was nothing on the test, it was fine and he doesnt wanna see me for another month. well anyways thats where i am now, 17 years old, in pain nearly every day, leg cramps, and a knot sticking out of my side that feels like a golf ball. But im perfectly fine, says the doctors. (sarcasm intended.)
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Avatar_m_tn
It is reassuring to see others having the problem I have started having since this summer, though unfortunate.  I am on my second urologist, but it seems my primary physician might actually be more interested in researching the causes of my pain.  I had 2 surgeries this summer in the span of 3 weeks to remove 3 stones, and have had consistent pain since.  When I go to the er in severe pain, sometimes there is blood in my urine and sometimes not.  Scans sometimes show stones, sometimes not.   Just last night the er docs told me that they won't be able to continue helping me with this.  Something about the amount of time I am in there and it flagging the DEA.  I think I actually got flushed and turned red when he told me this, because then he did say I did have a reason to be in there, but really needed to get pain relief through my physicians.  I felt embarassed that they would suggest such a thing about me.  I have been in turmoil starting to think maybe it is in my head, but reading these stories has helped me realize I am not only a victim of whatever it is that is causing me so much chronic pain, but also a victim of a system that is limited due to abuse and liability.  I don't blame the er, I understand their issue, but that leaves people like us stuck between a rock and a kidney stone.  I just want the pain to stop.  If it means I have to take pain killers, fine.  Hopefully my primary, who has shown initiative, will be able to help me.  The resolve of others out here has helped give me resolve to find a solution.  Thanks to all and good luck to those who need it, I know your pain.
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Avatar_n_tn
Good grief! I feel so bad for all the people who are suffering so much with these kidney stones. My heart goes out to you.

I recently found out I had a 13mmx16mm kidney stone in my right kidney. It was discovered after I was passing blood in the urine and developed a kindey infection. Fortunately the ER doctor advised me to go straight away to a urologist who eventually ordered the CT scan and found the stone.

Anyway, he performed the ECSW therapy he also did a cystoscopy(?) and inserted a stent in the urethra. The procedure appears to have pulverized the stone (future X rays will reveal the true outcome). The stone fragments were sent for analyses and results should return soon.

Anyway, the week plus after the procedure I was pretty miserable and had to take percoset. That stuff is good for the pain, but the side effects are pretty bad. Unfortunately the OTC pain meds would not do much. Thank God, I feel well now.

My thoughts about these kidney stones is that they probably make you sick and you don't even know it. For several years my urine was very dark in color and smelled pretty strong. All the urine tests they did over the years never revealed anything. How could this be? I know realize that foul smelling urine and dark urine mean something is not right. The stone was definitely causing bleeding in the kidney and the infection. Obviously something was rotten in there! I hope I don't develop more stones. I am afraid of the possible side effects of lithotripsy (diabetes, high blood pressure). I also hate the stent and the pain meds.

I have heard of an herbal remedy that might be useful to treat some types of stones. It's called Chanca Piedra and now days you dont have to go buy the leaves and make the tea. You can buy the extract online. I will try to avoid the foods that cause stones and take chanca piedra.
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Avatar_f_tn
i am 32 i also have two kids...i have had a history of stones for the last 13 yrs. i have had multiple surgerys to remove stones. I feel your pain.. i just started having kidney pain again.My regular dr. wont give me anything and im constantly visiting the ER....i finally got another urology appt. they ran more tests and said i have 7 plus stones and a cyst in my kidney...itsnow the weekend and im wating to find out more results. i asked for pain medicine and the urologist said no "i dont feel comfortable giving u anything untill i see whats causing the pain" thats BS what about the seven plus stones and the cyst? they make me feel like a druggie.. i just want relief!
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I know exactly what you mean!! Im a 31 yr old man that's had hundreds of kidney stones since i was 19. So far nothing can be done except pain killers,no insurance. Was wondering how you have gotten by for 40 years, ohh man i dont wanna even think about it, knowing I will no doubt be dealing with them myself for the next 40 yrs. All that seems to help the pain aside from a vicodin or some pot is just chugging water until i cant stand it. Do you have any other suggestions?
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Avatar_m_tn
I'm in my second kidney stone episode and in reading these painful accounts of what some of you have experienced, I consider myself lucky. Two days a go the second episode happened. I went to the Loma Linda Veterans Hospital ER, and was treated wonderfully. I was in pain, vomiting, and the nurse knew right away that I had a kidney stone problem after I explained my symptoms. The doc put me on a pain-killing IV, did a cat scan, and found the little critter - about 5mm. He prescribed pain medication and talked to me about what I should and shouldn't eat and drink. Wonderful doctor. He told me if the pain persisted (stone doesn't pass) in a week to come back to the ER. He also arranged an appointment with a Urologist. I am so fortunate to have such good care. And since this is my second kidney stone attack, I have resigned myself that there will be more, unfortunately. Oh, and the doctor said no salt, very little coffee, no soda, and drink lots of water with lemon juice. I just hope that all of you who have encountered doctors who don't seem all that concerned to finally be as fortunate as I am.  
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Since there are several posts on Kidney stones, Id like to share my research results that could possibly afford relief to kidney stone sufferers.
Magnesium will dissolve kidney stones....
I am a recently retired ICU RN and I did not realize until now how important Magnesium is in our lives. Its important to know whats the right kind to take as well. This knowledge could help so many people out there .. if they only knew so I wanted to help spread the word...... It would take some reading and research on your part to be able to help yourself.  I am not allowed to put in the dosage of supplements here , but the books I listed will give the answers.
Hello to all,
Kidney stones can be or are caused by too much calcium and lack of Magnesium > Since you are researching. I'd like to direct you to Search "Magnesium and kidney stones". This is one sure sign of lack of Magnesium, also included are gall stones, anxiety, depression, suicidal tendencies, stressed out feeling, tremors, seizures, fear of the unknown, numbness of extremities, pain in extremities, dizziness, high BP, unstable blood sugar, irregular, rapid heart beats, memory loss, insomnia, restless leg syndrome, cramps, - and hundreds more., Dr Carolyn Dean's book is amazing. "The Magnesium Miracle.". It will help you understand your symptoms and have instructions what Magnesium to take and how much, and you will be amazed at what problems lack of Mg can cause. You tube is another good source for searching on Magnesium, several clinicians have recorded their reports and findings. Also make sure to take note of oral magnesium replacement and transdermal Mg at the same time. Oral Mg takes 6 to 12 months before it would build up enough in your system, while transdermal Mg will work instantly but you have to spray it on frequently. I got used to it. I use both but oral replacement is much simpler eventually. I have put my whole household, friends and family on Mg supplementation. You probably will end up doing the same once you do your research. Its best to get the books too. They have further info that won't be on line nor on Youtube.  
The other book is "Transdermal Magnesium" by Dr. Mark Sircus... with instructions on how to use it , He is also on You tube. Taking Magnesium will also require including Vit D3, Vit B complex and Calcium rich foods (not pills) for balance.  
I wish you all good health, good luck and happiness..
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Avatar_f_tn
Since there are several posts on Kidney stones, Id like to share my research results that could possibly afford relief to kidney stone sufferers.
Magnesium will dissolve kidney stones....
I am a recently retired ICU RN and I did not realize until now how important Magnesium is in our lives. Its important to know whats the right kind to take as well. This knowledge could help so many people out there .. if they only knew so I wanted to help spread the word...... It would take some reading and research on your part to be able to help yourself.  I am not allowed to put in the dosage of supplements here , but the books I listed will give the answers.
Hello to all,
Kidney stones can be or are caused by too much calcium and lack of Magnesium > Since you are researching. I'd like to direct you to Search "Magnesium and kidney stones". This is one sure sign of lack of Magnesium, also included are gall stones, anxiety, depression, suicidal tendencies, stressed out feeling, tremors, seizures, fear of the unknown, numbness of extremities, pain in extremities, dizziness, high BP, unstable blood sugar, irregular, rapid heart beats, memory loss, insomnia, restless leg syndrome, cramps, - and hundreds more., Dr Carolyn Dean's book is amazing. "The Magnesium Miracle.". It will help you understand your symptoms and have instructions what Magnesium to take and how much, and you will be amazed at what problems lack of Mg can cause. You tube is another good source for searching on Magnesium, several clinicians have recorded their reports and findings. Also make sure to take note of oral magnesium replacement and transdermal Mg at the same time. Oral Mg takes 6 to 12 months before it would build up enough in your system, while transdermal Mg will work instantly but you have to spray it on frequently. I got used to it. I use both but oral replacement is much simpler eventually. I have put my whole household, friends and family on Mg supplementation. You probably will end up doing the same once you do your research. Its best to get the books too. They have further info that won't be on line nor on Youtube.  
The other book is "Transdermal Magnesium" by Dr. Mark Sircus... with instructions on how to use it , He is also on You tube. Taking Magnesium will also require including Vit D3, Vit B complex and Calcium rich foods (not pills) for balance.  
I wish you all good health, good luck and happiness..
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Avatar_f_tn
I truly agree with your thoughts on "processed" food and we all should be reading the labels and eliminate these chemicals in our diets BUT... I am an organic whole food eater and am still dealing with kidney stones. I just found out if your stones are oxalate in composition (which most are I guess) you need to be aware of high 'oxalate' foods in your diet. They are in tons of the "healthy" food ie dark leafy greens like spinach, nuts, wheat bran, beans just to name a few. Seems like all the foods needed for a high fiber low cholesterol diet. Also I've learned lemon does not have any affect these stones. Good luck to us all!
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Avatar_f_tn
Thank you so much for writing this! I called my urologist this morning because of kidney stone paid and they played it down . I've had hundreds of stones and  just had a catscan saying I had several small stone in both kidneys. They do not believe me that I'm in pain. I feel like I'm expected to just live my life in pain. I've had so many surgeries that I can't even count them I have 9 kids under age 12 and need to be healthy to take care of them!
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