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?

[ally1107]

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!

[mpviejo]

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.

[smadmech]

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.

[katiem15211]

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.)

[pamma707]

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...

[lostforwords101]

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