I just want to encourage all of you. I am a member and support group leader on the MSK board and an IC support group leader and director of MOARKIC. Because of the MSK we have lots of calcifications, infections and even chronic unexplained pain in the kidneys. I personally had a stone surgery in 96' and halfway through they realized the instruments were not sterile. So sadly my body was exposed to hospital resistant bacteria, yet when they pain became unbareable I was told like all of you that my kidneys did not hurt. Thus I was thrust into medical reserch and spending hours and hours looking for answers. In the end we have learned many things. My physician and I now realize that the bacteria set up a biofilm infection within all the calcifications. With a biofilm infection it does not show up on standard cultures and UA tests, because the bacteria do not slough off in sufficient numbers to do so. Then at times when the biofilm begins to disperse we can get very sick with only low level infection showing. I have some articles and research I would be glad to share with you if you pm me, but first check on our MSK support site and read through the many posts there and check into the healthpages as well. I have also publish some of my research on our MOARK IC website, and you can contact me for links and more info.
Here is the link to the MSK Support site:
http://www.medhelp.org/forums/Medullary-Sponge-Kidney-Disease-MSK-/show/256
Here is an article on the pain and treatment options we have found helpful:
http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185
And why does it hurt so much and yet no stone:
http://www.medhelp.org/posts/show/565929
I hope this helps each of you to find answers and hope!!
Shelly
Pretty much EVERY urologist will tell you that "kidney's can't/don't/won't cause pain. It's the surrounding tissue that causes the pain". BULLSH*T, is all I have to say.
For YEARS, I had chronic pain, so much so, that my urologist referred me to a pain-management doctor as he started to become weary of prescribing me narcotics for the pain I was in, and also so the PM could put me on something a little more long-acting as opposed to the short acting meds (ie: Vicodin, Norco, Percocet, etc).
After many a kidney-stone, many a PCNL, and many a cystoscopy, my NEW urologist says to me, "Do you realize you have clusters of renal-cysts all over your left kidney?" Now, that being said, they're 'simple cysts', but he said that THEY could be the cause of the pain.
He scheduled me for a renal-cyst-decortication, they removed/drained/cauterized the cysts, and low-and-behold... tada! My pain went away. That being said, the procedure is only effective in reducing pain 40% of the time, but I felt it was worth the risk.
Now that I am cyst-free, I STILL feel pangs from time to time, but it's nothing like it was. Only YOU can know your pain. I would ask your urologist to refer you to a PM and go from there. There are MANY alternatives to narcotics, if you don't want to go in that direction.
Good luck to you.
LMNO
I to am 47yrs and i,ve been dealing with chronic infections and kidney stones now since i was 9yrs, i had a stone removed when i was 9 and they saved the kidney sadly tho it made my kidney weak as a result i had many many infections like your symptoms in the end they did a nepherectomy when i was 21yrs and was told your fine now you can live with one kidney ok,YEAH RIGHT! ever since i have had hundreds of u.t.i,s and i,ve also had many many stays in hospital! i recently had a ultra sound scan which showed my kidney was normal however although it looks normal my bloodwork isn,t,so i am seeing a nephrologist on monday if i,m honest i,m praying that my only kidney is packing up because i really can,t take anymore,my husband of 25yrs left me because he couldn,t take anymore of my infections and frequent hospital stays,
Many times i have had symptoms like yours and each time i have been told many many times it wasen,t my kidney, i,m afraid that is a load of crap! i know all too well what a kidney infection and kidney stones are like and the doctors have told me til there blue in the face that it,s not a stone or infection in fact i was told it,s probably constipation!!! but i,ve now proved them wrong! the pain you have i too get it and it ain,t funny and if i were you i would tell them i want a second opinion and much as they don,t like it they may send you to one of their collegues but stick to your gun,s it is your body and you know it better than any doctor! so i personallyn would tell you, don,t allow them to fob you off sometimes the rsults may come back negative but that doesn,t mean you haven,t got an infection or stones , in fact i have just proved my g.p wrong by having tests done {24hr urine collection} when the pathologist tested it she also strained my urine and lo and behold i had two kidney stones, i,d say stick to your guns only you and you alone know your symptoms don,t let them fob you off goodluck x