I have been dealing with bilateral kidney pain for seven months now and am in desperate need for help/advice. From June 2020 to February 2021 I had six UTI's all treated with cranberry juice and lots of water. Did feel occasional twinges in the left kidney after the fifth one but mostly the juice and water seemed to work until the sixth UTI at the end of February when I started feeling pain in my left kidney and a couple of days later in my right one as well. Started with the juice and water again, the UTI symptoms went away in about a week but the kidney pain became worse, to the point that I could feel my kidneys heavy and inflamed, even touching the kidneys area was painful. Eventually I had a urine test that came back negative, then another one positive but no culture was done, then a couple more negative. From the beginning, the pain was on and off, hence the delay in starting antibiotics as I thought it was going away plus, after the negative urine test, the family doctor dismissed it as back pain so I only started antibiotics 18 days after the onset of the infection. After about a week of antibiotics I did not feel my kidneys inflamed anymore and the pain subsided a bit but was still very bad, debilitating. I took antibiotics for 12 days but there was no further improvement after the first week. The pain also came with nausea, hands tremors, lost 3kg/7 lb in a very short time although I was forcing myself to eat and spent most time in bed. The pain was, and still is bilateral, deep, dull and diffuse, and synchronous. Duration, intensity, location is the same in both sides at the same time. The pain is deep in the back in the kidneys, and/or flanks, and/or front just below the ribs. The pain comes and goes, alternating between periods of calm with very vague pain or no pain at all, and periods of pain, but overall mostly pain of various degrees of intensity. From the beginning I also started having clusters of foam/little bubbles in urine, and lately my urine is always cloudy. No protein in urine, had blood and urine tests that came back mostly normal, but with a drop in eGFR at 85 (my eGFR was always over 90 or over 100), and low serum urate/uric acid (about 17% less than the lower end of the range), and high amorphous crystals in urine. Had a CT scan and a DTPA Lasix renal scan/renography that did not show anything abnormal, just the eGFR low again at 86 although I was very well hydrated during the Lasix renal scan. Also a cystoscopy, normal as well. I used to go to the washroom once per night but now I go twice although I drink very little in the evening and stop drinking one hour before bedtime. Also, lately I need to use the washroom very often, especially in the second part of the day although I drink less then. Overall the urine output is higher than the fluid intake. I don't drink coffee or alcohol and do not take diuretics or other drugs.
The pain has gradually decreased in intensity in the first few months but have not seen much improvement over the last three months and it is still bad enough to affect my life. When it comes it lasts for hours and days on end with very short periods of low intensity and even then, it is very unpleasant. It still comes with nausea, weakness and lack of energy. A lot of times it feels like a burning sensation. I finally saw a nephrologist in person mid August, said it could be inflammation that goes away very slowly, that biopsy might be an option but not indicated and that he was sure it probably won't show anything anyway. I later called him when the pain got bad again and he said there was nothing wrong with my kidneys, same from the urologist and family doctor. Not sure what made the nephrologist change his mind. As though the pain I am dealing with is not enough, the whole experience with the doctors is very frustrating, almost not believing me, appointments only over the phone, months until seeing the nephrologist in person. The nephrologist even said that if I had pain I wouldn't be able to talk. Now my family doctor says the inflammation moved from the kidneys to the tissue around the kidneys. All this just based on the fact that the tests showed nothing wrong but the only test that would show interstitial inflammation or kidney scarring is a biopsy so even this is frustrating to hear the doctors say there is nothing wrong with my kidneys when I did not have all the possible tests and everything points to the kidneys (urine appearance, washroom habits, drop in gfr).
I am sorry for the long message but felt I had to explain it all as I am at the end both physically and psychically, not sure if I will ever be free of pain and be able to lead a normal life again, and I don't know where to turn for help. Can you please let me know, if anyone here has experienced or heard of something like this? Thank you so much!
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I am so sorry to hear about the rare health challenges that you are facing at this time. Due to the complexity of specific medical issues, we are not able to answer specific medical questions or provide treatment recommendations to individuals. I would strongly suggest that you get a second opinion from a different nephrologist to discuss your concerns/prognosis. That is your right as a patient
I didn’t have that specific pain but did have pain that no one could figure out. That’s when I was on dialysis. Now after my transplant I have a different pain that no one can figure out. Looking back, I wish I would have pushed further for answers. I can definitely relate to what you’re feeling and I would suggest that you keep looking for a doctor that will help you. That’s what I’m going to do. I know they’re hard to find but they are out there.
Thank you Bunkin. I already asked my family doctor for a referral to another nephrologist but am still waiting to hear from either of them. Hope you find someone too.
I am prone to getting UTIs and have experienced kidney pain (on the right side only). A cause was never established but it seems to have gone away at least for the time being. I still get intermittent feelings of having a UTI - last week to the point of calling my doctor to make an appointment since it was so bad. By the time they had called back, the horrible burning sensation was gone. Was it because of the tart cherry juice I drank? Inexplicable.
Here's a thought. Everytime I have had a UTI before giving an antibiotic they make sure they know what kind of bug is causing the problem. They want to be able to administer the correct antibiotic. Is it possible they didn't give you the correct antibiotic?
I can totally understand where you are coming from and empathize with you.
Don't know what to say about the antibiotic; it was Ciprofloxacin which is a broad spectrum antibiotic so it should have been ok. I have not had any UTI symptoms since beginning of March, just the kidney and flank pain that often feels like burning. With UTIs this burning is usually in the bladder/urethra - is this where you had it? My urine is cloudy but the last test I had in August did not show any bacteria. I just read though that you can have chronic pyelonephritis with no symptoms which sounds strange to me, or sterile pyuria. I keep searching the internet for answers but there is so much information and not always consistent.
The doctor who does not believe there is anything wrong with my kidneys said my pain is now chronic and gave me a referral to a chronic pain management clinic. I am having a phone call appointment next month. Curious to see what they say. I do not hold my breath as they normally deal with back/joints pain.
Do you do any exercises by any chance? I used to go to yoga class two times a week but at the beginning of the pandemic I stopped. I noticed that the lower back pain sort of receded once I stopped the yoga but not totally - it's always there a bit. It was on the right side of my back about 3 inches under my waist. My right kidney is smaller than the left kidney and the renal artery into it is blocked to a certain extent. I am sure that has something to do with it. My burning is in the uretha (as far south as it can be).
I have almost given up searching the internet - there are just too many possibilities and let's face it even doctors are taking a stab in the dark unless one of their tests points to exactly what the problem is. That's why my new cure for everything is tart cherry juice...lol!
When I feel better I go for walks and most of the times the pain goes away or gets better. But it does not always happen this way, a few days ago the pain started right after walking. I cannot seem to find a pattern, a reason/explanation to this, why the alternating good times and bad times.
For just over 2 years, I have been having kidney pain, along with dark foggy urine (full of white flakes) but no evidence of infection (via urinalysis or bloodwork) and normal kidney function tests (also via bloodwork). I haven't had any UTIs, but have other symptoms - some similar to yours, and some other ones as well - such as weight loss, weakness (especially in the legs), knee and hip pain, chest pressure, muscle aches, night sweats, neck pain, swollen lymph nodes, abdominal pains, and massive hair loss. Since no routine test shows anything abnormal, doctors just insist that I have "fibromyalgia" or "anxiety" (and one of them even went so far as to write in my health record that I have must have "deep mental issues" because I refused to accept their opinion that there is nothing physically wrong). They simply refuse to do any more to try to figure this out. I'm in Canada, too ...
Since the spring of 2020 (yes, it has been that long!), I have come to think that my health issue is vascular/autoimmune, and that it may involve a narrowing/blockage of various arteries, including the renal arteries. Could yours be as well? Because of this, I found PecanSandie's comment (above) about her partially blocked renal artery and back pain very interesting (although also very unfortunate, since no one should have to suffer these things ... )
I've very recently learned, from reading journal articles online, that sometimes arterial narrowing can be detected via stethoscope by listening for bruits (including renal bruits) at various locations across the abdomen, collarbone, neck. I'm going to have to try my luck at a walk-in clinic and ask a doctor to try this, hopefully this week (that is, if I can muster up the courage, knowing that the outcome will likely only be yet another "you have anxiety" beating). Since this is a very cheap test, I'm hoping that they will comply. A negative test doesn't necessarily rule out vascular issues, but a positive one could be a step towards both vindication and treatment.
I'm not a doctor, but thought I would mention these things to you in case it could possibly help.
Thank you Polaris_Ab and sorry to hear about your pain. Two years is a long time and no diagnosis is very frustrating and it makes you lose hope. The mental thing opinion is down right infuriating... I am pretty sure my doctors are not far from that belief either. I also had night sweats in the first couple of months, knee pain that got better but still bothering me occasionally, and also swollen and painful neck lymph nodes that also got better but not completely.
The doctors did check for some autoimmune diseases but the tests came back negative. When I saw the nephrologist he did place the stethoscope above my collar bones but only for a second if that, so not sure if that was enough to draw a conclusion. Next time when I see him I will ask to do/repeat this test. There is also a renal scan test that can assess blood flow through the kidneys - have you had that? I did not but I might ask for it.
Regarding the flakes and color of your urine, I do not want to scare you but papillary necrosis presents with tissue like pieces in urine, flank/back pain and cloudy dark urine. Have you been checked for blood in urine? Has papillary necrosis been mentioned/excluded by your doctors? Walk-in clinic is a good idea but I would also insists for more tests with your doctors. I am in the same boat and I too have started to lose hope and just pray the pain will go away eventually and that there is no kidney damage. All the best.
Hi Gotroot, thank you so much for your reply and for your suggestions. I'm not sure what a renal scan is? The only two tests of which I am aware that assess renal blood flow are doppler ultrasound and angiography (these days, probably CTA or MRA is preferred over invasive angiography). Is this what you mean? My thinking is that if any bruits are discovered, than MRA or CTA should be warranted.
With regards to papillary necrosis, I am certain that this is what is happening (and suspect that poor blood flow could be the cause). Yes, the urine is full of flakes looking exactly like pieces of tissue, usually white but sometimes bloody looking. I have mentioned this to 6 different doctors, but since urinalysis was normal, they all blame it on "vaginal discharge" even though the flakes are far too homogeneously distributed for that to be the case, and despite the fact that the flakes started at the same time as extremely dark yellow urine (despite my being more than adequately hydrated) and kidney pain. When I tried to explain this to my GP, she yelled at me "urine is supposed to be yellow!!!" For this reason (and many others) she is no longer my GP, and I now have to rely on walk-in clinic doctors.
I too have had some autoimmune testing - just the basic ENA panel, plus ANA, dsDNA, RF, CCP, CRP, ESR, and complement levels (C3 and C4). The only abnormal results were low C3 and low C4 - suggesting possibly autoimmune, but instead of further investigation, the doctor just said "fibromyalgia."
With regards to autoimmune vascular issues (and many of these involve the kidneys), autoimmune testing may need to go further than just the basic tests. Even then, in some cases (e.g. in some large vessel vasculitis (LVV) such as Takayasu's arteritis) there is no reliable blood test, and the only means to a diagnosis is via imaging and/or biopsy. I have recently found Vasculitis Foundation Canada (vasculitis.ca), which has information on a bunch of different types of vasculitis (including symptoms and tips for diagnosis). Of note, though, these resources may not be 100% accurate or up-to-date, or with perhaps slightly misleading information (for example, in Takayasu's arteritis, it suggests that inflammatory markers such as CRP and/or ESR are elevated, yet this is only the case in about half of patients with Takayasu - the other half have such inflammatory markers at normal levels.) Still, you may find this helpful - and I do hope I'm not sending you off on a wild goose chase ...
One of my main reasons for mentioning to you about vasculitis is that your illness started with night sweats, joint pains, and swollen lymph nodes (and this is how mine began as well). I have read that Takayasu's arteritis often presents in phases: the first phase involving arterial inflammation, along with weight loss, night sweats, muscle pains, and perhaps other "constitutional symptoms"; the second phase involves fibrosis of those portions of the arteries which had previously been inflamed, along with symptoms related to the fibrosis and consequent arterial narrowing but with diminished constitutional symptoms.
I'm glad that your nephrologist did some kind of test with the stethoscope. I agree that it wouldn't hurt to repeat it, and perhaps do some more listening in other areas (abdomen, maybe?). Also, ask for as many scans and tests as they will allow you to have. I wish I could have been even more forceful in doing the same, but I am not generally a fighter and find it very hard to keep getting back up to fight again after being so wrongly beaten down. Don't be like me!
A renal scan is also called a renal scintigraphy and provides info on blood flow, kidney function, urine flow. I think there are two or three types of renal scans depending on what they are looking for (I think Google would be more helpful with the definition and scope). I had the one that provides info on urine flow, not the blood (DTPA dynamic with Lasix).I did not have that many autoimmune tests but I really hope that is not what I have. My symptoms started with kidney pain shortly after the sixth UTI; the rest of the symptoms came up later.
I strongly encourage you to insist on more tests and maybe mention papillary necrosis to your doctors. Were you not able to find another family doctor?
Unfortunately, there do not seem to be any doctors in my area accepting new patients. So, for now, I have to rely on walk-in-clinics. And, of course, I receive valuable information from generous people like you!
Thank you for the information on all of these renal scans - I had no idea that they existed. I will definitely look into this. I will also mention the possibility of papillary necrosis.
I wish I could be more helpful to you. I see your point about all of your problems starting after multiple UTIs. What is the relationship between the UTIs and the rest of your symptoms, including the kidney problems? I wish I could tell you.
I find it silly that your doctors are so ready to give up after you have had a few tests (for example, a renal function test that assesses urine flow but not blood flow, and very few autoimmune tests). I hope you can get more tests, including one that provides adequate information on blood flow. And with regards to autoimmune issues, I am certain that many autoimmune diseases are know to often involve the kidneys (some diseases more than others). No one wants this, but if it is happening, then finding out as early as possible is probably a good thing. And if, after enough tests, you find out that this is not what is causing your problems, then that is even better!
You need to see a good nephrologist to help with this. My nephrologist always tells me that kidneys by themselves do not cause pain, UNLESS there is an infection, a blockage or a stone. Pain is not a good sign and need to get to the cause. It may not be an infection at all. You want to make sure that damage is not done to your kidneys.
Agree, just difficult to find a good one or get a second opinion. My family doctor was recommended as very good but I do not see it this way (he told me I was hypochondriac while I was in terrible pain, and insisted it was back pain). Same with the nephrologist who first said it was inflammation and then changed his mind without any further test or explanation and said I wouldn't be able to talk if i was in pain. Both were recommended as very good doctors.Anyway, some kidney diseases other than the ones you mentioned, can give pain and can be the result of multiple uti and/or an untreated pyelonephritis which was my case. That's from what I read on the net.
You said that when you go for walks, most of the time the pain gets better. Do you have a sedentary profession? Sitting for most of the day can cause lower back pain in exactly the same location as the kidneys.
I was told I was a hypochondriac when I was 18 and had breast pain. That was beginning of having very bad relationships with doctors. I know exactly how you feel.
I was very active before this started. I no longer work and I used to move around a lot. I wish it were back pain but it all started with an UTI. Besides, I do not think back pain makes you lose weight rapidly without trying, or triggers changes in urine appearance and washroom habits. Also, my pain is deep and diffuse, whereas back pain is more localized and closer to the surface. My pain also does not change with movement but back pain usually does. When I have pain, it stays the same regardless of how I move/bend/twist my body.
Find a new nephrologist - go to webmd.com (click at top "find a doctor) or healthgrades.com/find-a-doctorA few years ago we moved from WI to WY and since I have had a transplant, I needed to find a GOOD nephrologist. This site is great, because there are also patient reviews and lists nephrologist in your area. Make an appt., then if you like this new nephrologist ask him for a recommendation for a PCP. This is what I did and I couldn't be happier. I have doctors that listen to me and believe me. I also feel that they really care and are looking after me and my transplant.
Good luck. Let me know how you do.
There is also zocdoc I have seen the commercials on TV, but have never used them nor do I know of any one that used this site
Thank you WYOAnne. Unfortunately, I live in Canada and here you cannot see a specialist without a referral from a family doctor. Also, very difficult to change the family doctor.
I gave my family doctor the name of another nephrologist (not sure how good he is, it was a second-hand referral) and I am still waiting to hear back. I will have to follow-up again next week.
At this point I kind of lost hope (based on doctors answers and internet search) and I am hoping this will resolve by itself over time and that it did not affect my kidneys in a way that might lead to serious consequences later in life. But I am still very scarred that it might not go away. I will definitely continue to insist with the doctors.
I do have a 3mm nonobstructing stone in the right kidney but that is not the cause. It has been in the same place on all ultrasounds and the CT done from March to August. I passed a stone in my early 20s and the pain is totally different. The pain I have now is on both sides, symmetrical and synchronous, and dull. The stone pain is very sharp. Besides, if it were the stone, I would have long passed it by now. But it's been seven months...
That's not a bad idea, thank you. Just afraid they might jump on me with a CT scan which I already have and don't want another one due to radiation. But i can always refuse that. Funny but frustrating as well thing is that I did quite a few tests but never had pain while I had these tests.
I know you said you lived in Canada....why don't you just GOOGLE "Find a doctor" and see what it comes up with. Could get a new nephrologist , have your PCP give you a referral to this new nephrologist. And then have nephro give you a referral for a new PCP. Work the system...and maybe you would wind up with great NEW doctors.Just a thought.
Thank you WYOAnne. I am waiting to hear from the second nephrologist and have a second in-person appointment with the first one beginning of November so I'll go from there.
My husband gets kidney stones and he has always described the pain when the stone was in the kidney as a dull ache in his lower back. Once it left the kidney and got ready to pass, the pain got very sharp.
Since the pain is on both sides you are probably right that it's something different. A distant relative of mine had something called loin pain hematuria syndrome and to cure it they moved her kidney to a different location in her body. In the descriptions on line it's described as a pain disease.
It could be although none of my urine tests showed blood. On the other hand the internet says that sometimes the hematuria clears up which makes it difficult to diagnose. Did your relative always had blood in urine? Also, my pain got better, it is not as bad as it was on the first couple of months - this is what makes me hopeful that it will go away eventually but unfortunately it seems I am still far from that. I am also thinking interstitial nephritis - tubulo or megalocytic, or papillary necrosis...
I think she always had blood in the urine. Strange story - my mother was adopted and so I don't really those relatives except through the internet. Her sister did a fundraiser to help pay for her surgery and it describes her illness which is how I found out about it. The difference between you and her is that her pain just kept getting worse and worse.
Do you know if she took any medication that helped with the pain? I tried Ketorolac (prescribed by the urologist) but it did not help and I googled it and it was not good for kidneys being an NSAID (later confirmed by nephrologist), then Tylenol that did not help either, now just took 1 tablet of Tramadol (prescribed by family doctor) but it does not seem to do anything either.
When a x-ray for my back pain had showed a shadow suggesting a stone I self referred myself to my father’s popular urologist. He followed up with a ultrasound of the kidney to my relief, but I was not experiencing pain like you at that time.
I am curious what your usual diet is. Should it be high in oxalates a knowledgeable Nephrologist can advise you on a meal plan adjustment. If your intake has been on the high side painful “oxalate pumping” can occur with too quick correcting.
Oxalates may well have nothing to do with your situation. I currently participate in a oxalate support group & it seems UTIs have been the rule in many participants past medical histories.
Play it safe & pay a Nephrologist a visit if you want my advice. You may well end up seeing one down the line anyway so head directly to go!
Hi Clarissa,I avoid foods high in calcium oxalates as I know I am prone to kidney stones. All my infections were the result of a more intimate situation.
I already saw a nephrologist who initially said it might be kidney inflammation that unfortunately takes a long time to recede but then changed his mind and said there was nothing wrong with my kidneys and referred me to a pain management clinic (having a phone appointment with them later in October). He also said a biopsy might be another test but not recommended and that he was sure it was not going to show anything - don't know what brought him to this conclusion as I am suspecting tubulointerstitial nephritis and biopsy is the only test to confirm or rule out this (not that I want to have one). I am seeing him again in November and also asked my family doctor for a referral to another nephrologist.
When I had persistent right flank pain that doctors were unhelpful with I self referred (& self paid) a A+ rated Physical Therapist (with doctorate) for further evaluation. He located a trigger point over the painful area. After his thorough evaluation I spontaneously passed a stone the following day (without doing one prescribed exercise yet). Whatever works!
I myself have included acupuncture in a academic setting (without herbs) when conventional treatments needed a boost. This isn’t everyone’s cup of tea I realize, especially so during the pandemic.
In my oxalate support group some participates are actually testing the pH of their urine & modify various things as needed. A sibling told me that following a dental surgery she was told to add a little lemon juice to her water to cut down on bacteria. She said she has been adding lemon juice ever since. Could that help the kidneys out too I wondered? Although it is adding oxalates, so too is cranberry juice.
I have been drinking a cup of warm water with the juice from half a lemon first thing in the morning for a couple of years now. I heard it helps with kidney stones, not sure if it does - you are saying it is adding oxalates. Under the current circumstances I don't even know whether I should continue or not.As for the urine pH, I am a bit confused. I know acidic helps with avoiding bacteria/UTI, while alkaline helps with avoiding oxalates so it is a bit of a conundrum, right? Lately my urine is always more or less cloudy so although my pain is definitely not oxalates related there is something wrong here as well. I always wake up during the night to use the washroom, but then, lately, in the second half of the night, I wake up again but this time not with a full bladder (little urine comes out), but with a burning/discomfort in the bladder that is mostly relieved when I go to the washroom. This past night this happened twice. It does not happen during the day though, even when I spend more time in bed. So not sure what started causing this. I am thinking something in urine when it is more concentrated that irritates the bladder?
I sometimes use herbal teas: corn silk, cherry stems, horse tail, common couch - again, not sure if they help with anything.
I was also thinking to try acupuncture. I've tried it in the past for circulation (varicose veins) but it did not help so I am a bit reluctant.
No, you are right it is the lemon rind that contains the oxalates, not the juice. I had marked frequency earlier this past year. I changed my thyroid medication (dropped Tirosint) & thankfully it went away. I also did FODMAP for a spell & discovered I am intolerant to bananas. As this can be related to a latex sensitivity, I've removed latex from my house & my itching has largely gone away too. I did several other test kits available in the U.S. & made some other discoveries that I've been trying to correct through food mainly. So my overall situation differs from yours.
I do hear oxalate group participants with features like yours share their trials but we are required to not disclose these group meetings, or group related handouts. The facilitator isn't holding groups recently because she is busy penning for her publisher the final revisions of her upcoming oxalate book which one can preorder at this time. She has strong views that do not carry weight with mainstream doctors however. She hopes to influence current medical thinking with her book.
Have you been to a seasoned OBGYN doctor? Back in the days when I could go into a medical bookstore & flip through medical books to try & self diagnose myself I noticed good OBGYN texts had song & verse chapters on some issues you've mentioned. Sorry I haven't been of more help.
Glad to hear you were able to discover what caused some of your symptoms and correct them. I know mine were caused by untreated UTI but that is as far as I can go. I did see an OBGYN a few months ago and all tests came back okay.Can you at least disclose the name of the facilitator and her book?
The planned title for the book I had previously mentioned is called Toxic Super Foods, by Sally K. Norton. I think she feels strongly oxalates are a neglected subject matter in certain respects, & that is what has inspired her to write this book. It will be interesting to hear how it is received (in spring) because by her own omission she can be against the (medical establishment) grain at times.
I recalled this evening reading a study on how vitamin E had helped with kidney infections. I read this study longer ago than I care to mention, back when I was having stone issues. It would be nice if any follow-up studies were conducted since(?).
I do recall they ask you to hold vitamin E prior to procedures because it can increase bleeding, & I've read of other down sides to that vitamin, but it might be worth investigating. I only remember finally taking vitamin E with a little vitamin C for lingering pain following a breast biopsy & the pain went away.
I feel so badly for your situation. It's bad enough to have chronic pain and serious health problems and then to have your physicians dismiss your medical problem because the test they ordered is negative.
The Neph. telling you that you wouldn't be able to talk if you really had pain is down right insulting (and not true). I once had an ENT ask me if my pain persisted while I was asleep. I told him it kept me awake and I was in pain the second I woke up. He said I if couldn't answer if it hurt while I was sleeping he couldn't help me. I ended up in the E.D. with a gland abscess that almost killed me.
Drs. don't know everything. You know your body better than anyone. If you are not being taken seriously find new Drs. I hope that is possible within your health plan or Ins. That's what I'd do and have recently done again.
Physicians have a duty to treat your pain regardless of the cause. Sometimes they assume patients are drug seeking which is insulting as well. You have a documented history of infections. It's negligent that you are not being taken seriously.
I hope you find a physician to help you and that you find relief from your constant pain.
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