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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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Avatar universal
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!
Helpful - 0
Avatar universal
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 universal
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..
Helpful - 0
Avatar universal
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..
Helpful - 0
Avatar universal
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.  
Helpful - 0
5520806 tn?1504607677
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?
Helpful - 0
Avatar universal
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!
Helpful - 0
Avatar universal
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 universal
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 universal
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 universal
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 universal
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 universal
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 universal
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 universal
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 universal
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
Helpful - 0
Avatar universal
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 universal
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 universal
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 universal
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.  
Helpful - 0
1668236 tn?1308156426
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!
Helpful - 0
Avatar universal
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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Avatar universal
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 universal
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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