[loaf101]

so i have a history of kidney stones the most recent one was this past october. i thought i had another one - never had that sharp, stabing pain but that dull, constant, never going away ache pain for about 2 weeks now. went to go see my urologist who just told me to wait 3 weeks for an ultrasound. i was really frustrated with that (because i felt like i could not wait any longer and i truly cannot stand being told to 'wait to see if it passes', simply because i have NEVER passed one).

anyways... tonight i went to our immediate care center who took a urine analysis and sent me to the ER for an ultrasound. spent 3 hours in the ER, they took another UA, ultrasound, CT scan with the dye... everything came up perfectly normal. which only added to my frustration.

i was convinced i had a kidney stone. the feeling was so normal to me, being i just went through it. now im being told it might be an ulcer or some other gastrointestional problem. has anyone else had anything like this happen to them? i have no idea what to think anymore and any advice would be much appreciated. thank you so much for reading!!

[lioness]

its not a strange question. i have been a kidney stones sufferer for only 2 years having bilateral PCNL, 2 ESWLs, 2 ureteroscopies, and now will be scheduled for lasertripsy soon. This is residual stone burden no new stones yet. I cant tell you how many times i have told urology about my flank pain and they tell me it cant be the stones they are in the kidney, not blocking, of course they're in the kidney they dont move regardless of how much water they tell me to drink and i told my last urologist about keeping fluids down and he said it could be a GI problem i just grin and bear it and I just wait for my checkup and wait to ask questions then.

i will always have to have my stones treated and they will NEVER pass. i get used to the urologist telling me the stones arent causing the pain i just shrug it off any more. They either believe you or they dont most of the time they dont believe you and this is when you ask them what the pain is from? or ask them can they be medically sure that the pain isnt from stones trust me that opens the eyes of your doctor until they rule out urological symtoms. doctors dont like to hear the words from their patients "I told you so" the thing is that you have to have labs that support your subjective complaints that is when you ask your urologist to refer you to somebody who can find out whats wrong otherwise you will be bounced around like a rubber ball like i was for two years. I have never had a health problem until being diagnosed with kidney stones. this has been a learning experience for me and if i didnt communicate with my doctors none of my tests or treatments would have been done.

I also bought kidney stone prevention books written by urologists. . more information in them than from the Internet. doctors arent what they used to be. . youre lucky you get your questions in by the time they rush you out. . . of their office and i drive 2 hours to get there. . . have for 2 years. .

My stones were all infectious i get to deal with the frustration of stones & infection the rest of my life with the burden of ua's & uc's i can drink a gallon of water a day and my stones wont move. I think they are glued to my lower poles.

The calcium problem wasnt addressed until this year as well as the cause of the infection again i had to nudge my urologist to do a uridynamics which should have been done a long time ago since they never believed the stones were causing the recurring UTIs in the first place.

The thing i would tell you is to keep talking to your urologist be assertive if you dont nothing will be done. If you actually get a urologist who doesnt just do surgeries and does his own metabollic workup for you even better so youre not referred out to assistants that dont know your history very well.

Good luck. I hope they find out what is wrong.

[carlso]

Lioness, did you ever have abdominal pain with the stones or just flank pain? I have flank, back and abdominal pain at the level of my kidneys and do not know if this is from the stones or parapelvic cysts in the kidneys. Thanks.

[lioness]

No, just flank pain and short jabs in the back in both sides. My uros have never believed my flank pain or any pain symptoms for two years. If your uro rules out urological symptoms then you probably have no choice than to go to your regular doctor who could refer you to a nephrologist. . . there are some nephrologists trained in stone disease. . .keep communicating with your uro, though. . . since you have abdominal pain it could be a stone moving but since your tests are normal and the dye didnt show obstruction your best bet would probably be to go to your regular doctor, but keep talking to your uro. . .did they do any abdominal tests? did they rule out kidney cysts?

theres nothing worse than telling a uro urological symptoms and then they in turn tell you "no" it cant be your stones. .

Hang in there. . . hope they find out what is wrong. . . hope this helps. . .

[robomo]

You need to ask your urologist if he has ever had a kidney stone. I'm pretty sure he will say no. You CAN have pain when the stone(s) is in your kidney. I've gotten more answers from my internist than I ever did from a urologist.

[lioness]

I have talked til I am "blue in the face" that I can feel the stones in the kidneys and all they tell me is "you can't be in pain" blah blah blah. I dont take pain pills at all only when I have treatment. When I have ESWL it feels like a MAC truck hit me. If the stones arent moving or obstructing they dont believe me. It's a waste of breath for me. A true doctor would actually find out why you have pain instead of passing off the pain as something else knowing that your only health problem is kidney stones & recurring UTIs.

Now I get the joy of having lasertripsy soon. Cant wait to get back from Jamaica scuba diving to have that done.

I havent had much like with any of my HMO doctors. They leave or dont return phone calls. and dont have time to keep taking time off work to go to a doctor who doesnt listen to me anyway. I will get one more treatment from this uro then next year (insurance change) am going to my local clinic where I will get better bedside manner & better care.

[carlso]

I do have kidney cysts - bilateral parapelvic renal cysts. They were 5 mm each when I had my CT scan done in January. That urologist never even mentioned them, even though they are on the lower poles along with the stones, and my internist said these cannot get infected but I have read they can. I didn't know about them until I got the CT report from the first urologist. I have been waiting to see a new urologist. He is head of the UT medical group and specializes in women's urology. I am to see him next week but we are going out of the country 6 days after that and I am nervous about that also. Something is causing abdominal pain at the kidney level, along with back and flank pain. I have been on Augmentin for two months but still have inflammation and the last month I have had ankle numbness. I know like this all sounds like too many symptoms but it just keeps getting worse throughout these seven months. I have never had a health problem before this. When I do the UTI strip test, even on Augmentin, the white blood cell part shows positive. I have had white blood cells in my urine the whole 7 mos. regardless if I am on Levaquin, Microbid, Bactrim or Augmentin. And the inflammation keeps getting worse.

[lioness]

Have they given you IV antibiotics? I have been trying to beg to get them, falls on deaf ears. . .

It is good that you have a urologist who specializes in women's urology since we get the UTIs which can make it a more clinical problem in kidney stones. Something I should have thought of since my former treating urologist did EVERYTHING! Didnt see a lot of female patients in the lobby. . .

I get urince culture's every 2 weeks. Before I just got strips in the Urgent Care, but then I had to f/u with my urologist, who is 2 hours away. I had to ask for them through an ID doctor that was finally assigned. She has been great! very aggressive with urology. . I now have another UTI and on Cipro not senstive to that antibiotic, yet. . They dx'd me with urinary retention, I think its bogus. . which they think is causing the recurring UTIs.

I have had to read books on Kidney stones. Then I talked to my dad's urologist after the first surgery, since my former treating urologist basically dismissed me at the postop. He just shakes his head in disgust at the way I have been treated. he said that they arent curing the infection. . I said EXACTLY what I have been telling them. . I told him I would have him take over treatment next Spring.

I get my urine test results online. I have persistently alkaline urine which doesnt help the stones I have or UTI. Again I have read on the different bacteria in UTIs since I have had three.

Keep communicating with your urologist. . I am curious to know what happens. . sounds like you have been bounced around, too. Frustrating, isnt it?

Your health & body are important, tell your doctor, this. Unfortunately sometimes they need a nudge to find out what is wrong. .

[carlso]

My appt. is a week from tomorrow with the new urologist. My husband is accompanying me as I really believe a male dr. thinks a woman is less credible. Besides, it is good to have someone else listen to the information and filter it. I definitely have kidney, back and flank pain and inflammation, but the abdominal kidney level tender spots don't totally make sense as everyone tells me the kidneys are in back. I assume it could be the cysts but can't imagine they have grown. Besides it is impossible for me to have an infection with the antibiotic doseage I am taking. The abdominal pain started about 3 mos. ago and has not been addressed with anyone as I have just been on the Augmentin for so long. But 3 weeks after I went off the suppressive antibiotics a few months ago, I experienced night sweats where my gown and sheets were soaking. That went away on the Augmentin but the inflammation continues. I hope he will do an ultrasound to look at the current state of the stones, cysts, etc. but we still have this overseas trip looming. I am going off the Augmentin for the 10 days before the appt. so hopefully more will show up. Thank you for sharing so much of your experience.

[lioness]

Your welcome.

I agree with you that male doctors dont understand female patients as well as male.

I hope your new urologist finds out what is wrong. I cant change urologists until next Spring.

Being that my father is an attorney and I am a paralegal kind of helped the situation. He was more frustrated than I was and wanted to come on my appointments with me. Being a concerned father. I think that is part of the reason why they were careful at what they told me, little as it was. . My dad was almost to the point of giving me his business card and leaving it with them.

Truthfully I would rather go to my dog's vet lol than to my local urologists or regular internist/GP.

If my former treating urologist didnt do my first surgery I wouldnt have been able to go on a trip of a lifetime. He did an excellent job getting what he could. its the afterwards treatment that I have been frustrated with. Had I known it would be like "doctor in a box" I would have changed HMOs after the first surgery. Its been a long two years and I never had a health issue until my recurring UTIs started & then they found the stones, too late because they were taken out in my flank. .with double J stents out the back. I never want to go through that again.

Again, I am curious to see what they find out since you have been on antibiotics. Levoquin is a good antiobiotic I havent heard of Augmentin.

I was on Macrodantin for about six months then the bacteria became resistent to that.

Again, let me know what happens. Sometimes it helps to get another person's perspective. . .

I havent read much on renal cysts since my problems are stones & UTIs.

I think if patients were told more info from their doctors and if doctors would truly listen to their patients they wouldnt have to start reading or self diagnosing their own medical condition.