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Undiagnosed severe left flank pain for months - is this kidney related?

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stefxgx
stefxgx

I have had severe left flank pain for 3 months now and still not been able to get a diagnosis. I am a 24 year old usually fit female.

The pain started towards the end of April while i was in work (an office desk job). It was on my left side in between my hip and ribs, spreading down to my groin. The pain got worse over the next couple of hours, and it has been a constant dull ache since then. The pain is most strong on the back of my left side but i can also feel it from the front.

I went to the doctors with this pain where i done blood and urine tests and got put on antibiotics for a suspected kidney infection, as well as codeine to ease the pain. The results came back with an apparent slight kidney abnormality showing, but a week later, i was still in a lot of pain and unable to move much, so i went back to the doctors where i got referred into hospital. I spent the night in hospital where i had more blood and urine tests, as well as an ultra sound. The hospital told me my results showed a UTI, but the ultrasound was clear, so i got put on another course of antibiotics and sent home. A week later, i was still in a lot of pain so i went back to the doctors where i was put on another (stronger) course of antibiotics for 2 weeks. The pain eased slightly above the groin, but the main pain on my left side was still the same.

My doctor then referred me to gastroenterology at the hospital where i had to wait weeks for an appointment, only to be told that he didn't think it was bowel or stomach related (as i can still eat and pass stools normally) and that i should have been referred to urology.

My doctor referred me to urology where the waiting list was 2 months, so i decided to get a private consultation with a urologist. The consultant done a urine test, which confirmed i had blood present in it. He went over my symptoms and suggested a CT scan in case i had a small kidney stone stuck which had been missed by the ultrasound. He was also concerned at my frequency as passing urine (this is usually over 20 times a day with anywhere between 3 to 8 times through the night). He referred me back to the NHS for the CT scan which i had a few weeks ago.

The CT scan results came back clear of kidney stones. My consultant now thinks the issue could be musculoskeletal but he still wants to see me to do some bladder studies as he is concerned about the frequency of urination. I have an appointment with my urology consultant for a few weeks time, but to see someone to investigate if the pain could be musculoskeletal there is a 3 month waiting list.

I am still in a lot of pain, both when moving and sitting (it never eases), and it is effecting my every day life. I can't go into the office to work due to the amount of pain i am in, i can't drive with it, and i haven't left the house the past few month apart from doctor or hospital visits. I am constantly feeling down and tired, and often get spells of dizziness and my eyes blacking out when i stand up (i am unsure if the tiredness and dizziness is related or not). I had a breakdown the other weekend where i cried for 2 days straight with the pain, the frustration of not being able to get a diagnosis, and not being able to do anything. I am worried that depression is kicking in with how long this has dragged on for.

I had no injury or knock to the area before the pain started. My mums side of the family also has a history of nephritis (kidney disease) with 4 of my aunt and uncles having it, but my urology consultant doesn't think there is a connection.

Is anyone able to provide any help or suggestions on what they think this pain could be as well as how to help ease it (the codeine doesn't help)? I feel like i have been passed around so many different people who still have no idea what is causing this pain.

6 likes, 174 replies

174 Replies

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  • banu2014
    banu2014 stefxgx

    Posted

    Hi,

    I can feel your pain and frustration. I went through all of that myself..all the steps you described. From crying night longs to A&E visits to urology (also have family history of kidney problem and at first they thought it is kidney stone as no infection was found), gastroenterology and rheumatology. I had CT scan, ultrasound, cystostcopy and just yesterday a gastroendoscopy and colonoscopy. Still not %100 diagnosed but focus is on my bowels. I also said I was going to toilet and all that but I was told it could be an overflow and it is a simple pluming problem and that I am getting spasm (just to note down- I get the pain only early mornings and gradually late afternoon it disappear . Hence why doctors were saying it is bowels coz only bowels have a timing and no other organ). So while focusing on your kidneys please insist to your GP on the likelihood that it could be your bowels, too. Wishing u all the best, B

    • HisPandagirl
      HisPandagirl banu2014

      Posted

      That is what I thought it was but they refuse to check it out at ER the onyl.wanted to check for stones or infection. But I have been in pain for 5 days no relief at all on a pain med and still feel the pain its the bad my back hurts very very bad also, and my side spasms and hits me in waves of pain so bad I what to scream.
  • victoria_80299
    victoria_80299 stefxgx

    Posted

    Hi,

    your symptoms are more or less exactly what I have been experiencing for the past 3 months. I do have nephrotic syndrome but my renal consultant has assured me that this is not causing the extreme pain i have in my left flank or the nausea and vommiting that i have on a daily basis.

    Pain killers don't touch it sometimes and i have been unable to work, go out or function as a family member. I have spent 16 days in hospital and have had every conceivable test. I am due to have an endoscopy in 2 weeks. If this comes up with nothing i really don't know what to try next, am at my wits end.

    it has been suggested to me that it could be musculoskeletal and one Dr suggested that i adjust my posture! And sometimes we just have to push our bodies to do things!

    one bit of info i have found is that symptoms match having too much calcium in blood. I am going to insist they test for this in my next blood tests.

    I am going to request that i have my bowel looked at and also see an endocrinologist as i have been doing some reading and that seems to be the next avenue.

    i also looked at fibromyalgia

    i know what you mean about feeling so low, like its in your head, surely someone knows what's wrong?? Persevere, keep going back to GP, tell him you are not happy and need answers. That's what i am intending to do.

    probably not much help but it may help to know your not alone and hope that we find answers too.

    take care

    • djarvis
      djarvis victoria_80299

      Posted

      I have had this pain off and on for a few years .. I have had mri scans and ultrasound..  all came back fine. The pain is so bad at night I can’t move in bed with out moaning in pain.. I found that I would start around my cycle time.. now I’m in post menopause 8 yrs and still have it off and on for weeks.. recently I have been having it on my right side flank area.. dull aching pain all day long.. no nausea or vomiting.. feel fine after eating...

      I have been wondering if it was my gallbladder. But I feel fine after I eat and no stomach pain.. 

      I may need to call my Dr and ask for a scan.. 

    • amy35534
      amy35534 christina2323

      Posted

      I had a hysterectomy about a year ago. I had fibroids that were attached to pretty much everything. They removed muscle and everything. I still have some pain from time to time. But I do have an artery that is cooled around my ureter. They told me they’d have to remove my kidney and that had about a 40% mortality rate.  I said no way. I’ll live with the pain. At least this way I’m still alive 😁. 

    • Nickson128
      Nickson128 victoria_80299

      Posted

      Mam did you get rid of the pain,if yes please share what you did to get rid of that
  • leilasee
    leilasee stefxgx

    Posted

    Has there been any revelations for any of you? *Fingers crossed

    I have also been having the pain for months (since March to be exact). It started as a dull pain that was only felt on random nights.  It has since progressed.  Not a day goes by without the left flank pain.  It changes daily from blunt pain to sharp waves that make me gasp they hurt so bad.

    I have been to every type of dr and tested for more things I can count.  It is very troubling 1. because dr bills are racking up with zero results and 2. because it is always in the back of my mind that what if this really IS something serious and the more time that passes, the worse whatever it is gets!

    I am trying physical therapy next week, hopefully that will yield... some results! Because nothing else is... sad

    • david28533
      david28533 leilasee

      Posted

      Thank you so much for posting. You and I are in the same boat, except My pain started in June. If I try to drive any distance, or turn or bend the wrong way, it takes my breath. I sat in a wooden booth at a restaurant recently and my left side flank became numb. I have a colonoscopy scheduled Dec 4th. And yes, the bills are piling up. Good luck, and thanks again for posting this.

      David

  • Dromore
    Dromore stefxgx

    Posted

    Hi there, Did you ever get an answer to your problem of sever Flank Pain? My story is very similar to yours, i was two years trying to figure out what the extreme pain was.I took loads of painkillers but Nothing killed it. To cut a very long story short, I was referred to a Urologist who diagnosed that I had Urinary Tract Obstruction, which is a kink or blockage in the tube between my kidney and my bladder. So I had keyhole surgery performed and that sorted it. But unfortunatley almost 5 years on I am currently experiencing the same pain on the opposite side and am awaiting a Renogram xray to see if my left kidney is now doing the same thing.

    I would be interested to see how you got on and if you got sorted?

    • jen16439
      jen16439 Dromore

      Posted

      I am struck by the diagnosis and surgery you've had with regard to the topic. I've been saying for SO long that I must have an undetected obstruction but I thought it had to be bowel related... Apparently not & I have an unhealthy history with my entire Urology system since I was very very young.

      Was it a CT that caught this?

    • klb1011
      klb1011 Dromore

      Posted

      I too am suffering from the same symptoms. Why did it take 2 years for doctors to see an obstruction. What did this doctor do differently than others? What test uncovered the obstruction?
  • ollie515
    ollie515 stefxgx

    Posted

    Hi there stefxgx!

    I have just read your post about the troubles you have been through, and found it quite interesting.

    I am an 18 year old male from west sussex, UK.

    For almost 2 years now I have had similar pains to what you are describing.

    It started when I was 16 years old, I trained in the gym 3x plus/week and was relitively fit and healthy. One day I came back from the gym and had quite bad flank pain but on my right side... Quite painfully that I had to sit down as standing straight was quite difficult. However after taking some paractamol or ibuprofen the pain would ease off and I was fine for a few months atleast! I just put it down to a pulled muscle or something due to woring out at the gym...

    But, this happened a couple times over the year of 2013, and on some occassions when I would try to pass urine it was severly painful! 10/10 pain, it felt like I was passing razor blades through my stomouch! I cannot describe how bad this pain is, its like nothing I have ever experianced. Again with some painkillers it kinda went away. I allowed this to happen atleast 2/3 times until one day at college it happend to me. The pain starts off almost like a bad stitch, walking is very difficult, and then on trying to pass urine I get this severe pain. Anyway, I had no painkillers, and I wasnt able to empty my bladder, i tried to pass urine probably 3/4 times over the day. I could pass urine, however I had to stop because of the pain, so thats why i couldnt empty my bladder. In the end I got my mum to pick me up, and we booked an appointment to see my GP that day. He was quite concerned, tested my urine which presented a trace of blood in it. He organised me to have an ultra sound and blood tests. Blood showed nothing and everything was ''normal'' and the ultrasound showed no abnormalities. To cut a long story short, I saw a Urologist in January 2014, and over the last year I have had the following tests/scans; x-ray, rigid cystoscopy, renogram and CT scans. ALL showed nothing abnormal!! I had the CT a few months ago and since then I have been admitted to Accident & Emergency on two occassions, both where I was at college. The last time an ambulance had to be called and the paramedics had to escort me off the toilet seat because I was in so much pain I couldnt move after passing some urine. This was very distressing and awful situation, I wouldnt wish that pain on anyone. I had 2x 2.5mg injections of morphine when i got in the ambulance which like the last time i was in A&E worked really well for pain. However after an hour I still needed to pass urine, which was quite difficult; most likely due to the stressfull situation and the environment. I did manage to pass some though, but after a few mininutes the severe pain erupted again and i had to immediatly stop. This was after the morphine! I was in hospital for 13 hours and it wasnt until I had had a further 10mg morphine and 2x 1000mg intravenous paracetamol that I was able to comfortably pass urine with no pain. I had had further blood/urine tests and som xrays done but after 13 hours was discharged! Just like the time before i was in a&e.

    I am currently waiting to have a second CT scan done under the General Surgical team however this time i am going to have a contrast  dye injected, similar to that used for the renagram (kidney scan) i had earlier this year. I have been waiting months and months and still havnt got even a date for this scan. My GP has chased it up twice and still nothing. Like with you, I am still in a lot of sever pain, every day 24/7 and no one knows why. The only information the doctors have is that sometimes there is blood in my urine and that when i am in severe pain my heart rate and blood pressure soars really high.

    Its really getting me down and affecting both social, leasure and work activities. I havnt been able to train in the gym for over a year now, since october 2013! This has really ruined my confidence and my self esteme.

    I have been precribed all these meds: co-codomol, buscopan, colofac, colofac MR, colpermin, propranalol, atenolol. I have been offered other things like the SSRI Sertraline and tricyclic antidepressant amitriptyline but I do not want to use these long term medicines untill every rock has been overturned. In the process of finding out whats wrong with me i dont want to cause other medical problems due to painkilers etc. I am only 18!! This is a nightmare...

    I have currentky been prescribed NSAID Naproxen 250mg, 1 three times/day as required, but this isnt enough. They take hours to kick in and when they do its still not enough! and im pretty sure I can feel my stomouch burning after taking it.

    I have tried to help myself such as checking for and sexually transmitted infections etc I have removed dairy from my diet and im slowly removing wheat and gluten. This is beuase sometimes after eating some foods i get really severe pain, I had a kfc 4months ago and after eating that i couldnt walk...But then some foods that have caused this i have been able to eat on another occassion and have been fine. So its really confusing and not clear if food is playing a part on he pain! I am running out of ideas and patience!

    As a side note, the majority of he time the pain has been almost under my belly button on the right side, or in my groin, or both! I get quite bad lower back pain especially in the morning and when i lay down to sleep at night. I do play the drums so this may just be a coincidence but im not convinced because i never used to have back pain this bad before all this!

    However, the last few months i have actually noticed more and more having pain on my left side! not as severe but quite noticable.

    The last doctor who i spoke with in hospitale told me I was a conundrum, a mystery. They have no clue whatsoever!  That doesn't leave me with much faith or hope. But iv got to believe that they will fix me, because its the only thing keeping me going...

    Im not 100% sure why I wrote all this, but one thing i know is that chronic pain is difficult to cope with and that maybe if we all shared our thoughts and experiances it may be easier to cope and manage with. even if its just a little bit.

    I will keep you all posted on what happens with me.

    Id like to hear your experiances, and if you have found anything to be of good pain relief. I am experimenting with a few natual things like peppermint tea. I will also try aloe vera juice. The only phamaceutrical drugs that have worked for me is morphine for pain, and Diazepam (Valium) to ease stress, anxiety, the dreadfull muscle spasms and the emotional pain. Also helps me sleep as the pain keeps me up every bloody night.  But both of these are highly addictive and wash you out. I cant function on these, and this is why i am trying to discover some natual remedies, if you know of anything id be grateful if you passed this on.

    I hope they can fix you to! Let me know what happens!

    Regards, Ollie smile

    • amanda33492
      amanda33492 ollie515

      Posted

      I apologize for not including this in my posts ... Back Pain was another Major Symptom for me. My Spine was On Fire! I couldn't Sit, Stand, be Vertical for more than an Hour before I lost my will to Live!

      It was the PULLING of the Kidneys Ureter that caused Excrutiating Back Pain! 😂

      Any "Thin Belts" around My waist would send me into Immediate Meltdown Pain ... my under wire in my bra pressing on my ribcage also became unbearable after 30 minutes!?

      This is the Strangest Condition I've Ever Heard of and it Consumes Your Entire Body!

      My skin was Covered by Psoriasis, I had Allergies to Food and Medications which had Never Been a Problem, Night Sweats on an Epic Scale, Bladder never felt "Empty", Skin Hurt as if I was Bruised from Head to Toe, Vision would change from Day to Day, Belly Button was soo tender I could barely make it thru the day with slacks that pressed on it, Sensitivity to the Sun... Easily Burn, etc...

    • HisPandagirl
      HisPandagirl ollie515

      Posted

      Hey so I would suggest trying lemon water a glass in the morning and when ever you want through out your day, I hope you find answers soon this isn't fair to be in that much pain and yet have everyone say there isn't na reason. I'll pray for you, my pain is even now as I type this severe and I am on indomethacin for pain and its not tocuhing it! But its in my right side was in the ER for 5 hours screaming in pain almost blew my blood pressure and went into cardiact arrest it hurts worse and worse with each wave and its been attacking my back my spine also. sad
    • SheriD
      SheriD ollie515

      Posted

      Hi Ollie,

      I sincerely hope that you've found relief and solace from the horrible pain you've been going through. I'm in the States in North Carolina and came across your post and had to reply. I am an RN working in the Post Anesthesia Recovery Unit. I have encountered many with similar symptoms as yours. Generally, they have had cystoscopies and voiding cystograms that reveal a condition known as Interstitial Cystitis. I am in no way diagnosing , but your sx sound so similar even foods as innocent as tomato or fried chicken ( fat) can exacerbate it!

      Get well soon, Y'all!

      SheriD

    • andrea75543
      andrea75543 ollie515

      Posted

      Did you ever find out what was wrong? I had a similar situation on and off stitch pain in my right side for 4 years. Ultrasound was clean etc. GI dr said it wasn't anything related .. My dr thought it was just muscle spasms etc.. I ended up having a upj obstruction at the entrance to my right kidney. I was having renal colic attacks on and off for 4 years. I guess it was kinking and unkinking. Just had a nephrectomy last January because it was caught too late 😞
    • amy35534
      amy35534 andrea75543

      Posted

      No I never found out what was wrong. I have had several family members needing nephrectomy. They told me I have a crossing vessel but it's a vein so don't worry about it.

      The pain comes for awhile then just goes away. There's no predicting it.

      How do you feel after the nephrectomy ?

    • lee01927
      lee01927 amanda33492

      Posted

      Hi, I wanted to see if you have had a diagnosis since your post or any relief. I am having the same symptoms and I'm mentally exhausted from it all.

    • karen17825
      karen17825 ollie515

      Posted

      Have you ever been checked for inguenal hernia?  Can cause severe pain.  Like you, I have been having this pain for  almost 3 month's,with all sorts of test.   My flank pain is on the right side and my test show I do have kidney stones,they are on the left side,go figure! I have had high bun levels and now high liver levels and high thyroid levels but still my dr. is waiting and doing more blood test .  I ended up in the hospital emergency room in Feb. before the flank pain  began in May.  While there I had extremely low blood pressure,acute kidney trauma and hight thyroid reading.  What I am wondering is what kind of damage is going on when previous blood work from 3 yrs.ago to present show these high readings?  My dr.  never told me about  these findings. By the way. just for general check-up I see I see this dr.  2 times a year.  I am just finding out what my test said because I demanded in writing  from the labs. concerned,my lab readings for the last 3 yrs.  What is going on with our  health care industry.  Even the hospital didn't share my reading with me. All they said was  I had a diagnosis of Low Blood Pressure.  Once I got my report myself I found out I  had early heart failure and the acute kidney trauma.  All this information would have come in handy in May when this pain first started.  Now I am going to start all over again with lab results and hospital rresults in hand.  When I was going to a nephrologist about 12 yrs. ago I heard him tell  a young man who sounded like the kind of pain you are in that he had    the inguenal hernias so that is why I mentioned this to you as another possible avenue to have checked.  I hope all of us on this site find our answer.  I have had over 78 surgeries due to a car accident in 1983 so I know how to endure pain ,and have R.A. as well but thi is no walk in the park pain for sure.Take care and stay strong and as  possitive as you can.

       

    • Tiff3575
      Tiff3575 ollie515

      Posted

      Hello Ollie! smile. Did you ever find out the cause of your pain and problems? I am a 17 year old female and I am having very similar symptoms to what you are having! (Pain near kidney areas on back especially on left side, etc) I am also having brain fog, concentration problems, dizziness, so it's been hard to exercise too. I also noticed that I feel dehydrated easily and I always have symptoms of dehydration even though I drink so much water like a camel every day 😁. Luckily I am not having pain when urinating though. and last November in 2015, I had a kidney infection and I had to take antibiotics. After that my stomach hurt every time I ate and i have pain in my kidney areas that get worse after eating. For a long time my docs thought it was musculoskeletal and I was In physical therapy for months with no help sad. I've seen so many specialists and doctors and I've had Ct scans that come back normal....so I'm wondering, did you ever find out what was wrong? It would be great to know because it would help me a lot smile smile smile smile

    • ollie515
      ollie515 Tiff3575

      Posted

      Hi Tiff3575!

      First time I have posted on here in a while, my pain and symptoms have deteriorated badly over the last year.

      I'm sorry to hear that you are suffering, none of this is pleasant! 

      I do now have a diagnosis! After all the testing, procedures and scans etc not showing any cause for my symptoms, I was reffered to pain management, last year November 2015. I thought that I would just be stuck on pain meds with no answer but I was very fortunate to see a doctor who had seen my symtoms before when he worked as an army doctor. In 30 mins I got more information than I did in 3 years of being passed from doc to doc! He said he was sure I had: Loin Pain Heamaturia Syndrome. You can find some info here: https://en.wikipedia.org/wiki/Loin_pain_hematuria_syndrome 

      I was instructed to be seen by specislists in London to have this diagnosis confirmed and to be treated. So my journey didn't end there, really it had only just begun!

      Since then I have been up to London on several ocassions and seen a few different consultants at University College London. It wasn't until I met Dr Ordman who works at The Royal Free hospital London, who is a consultant pain specialist, this is taken from his biography on the website: ''He specialises in complex regional pain syndrome, loin pain haematuria syndrome, and pancreatic cancer pain. He also specialises in the mind and body interface, and the low mood that pain causes.''

      Unfortunatly this disease, LPHS, is NOT curable. But Dr Ordman is taking very reasonable mesaures to treat me. On the 29th of this month I am having a splanchic nerve block, this is a trial to see if it numbs the pain. If so then he may go ahead and perform a surgery called 'RadioFrequency Ablation', in which radiowaves, guided by x-rays, are used to burn the nerves. I am also due to have a Ketamine infusion, closer to home, in 2-3months.

      This is both an exciting & nerve racking development but I believe this is the door to a better quality of life. I am currently on daily OxyCodone, Lyrica & Amitripyline as well as a few other meds PRN. This just about makes it berable so I can work part time and do my DJing, but it's not enough so I'm really hoping this nerve block will work and then surgery to follow! 

      I have to go now, but I will keep you posted on how it goes,

      The problem with urinery and flank/loin/abdominal pain/symptoms is that there are so many different condtions & diseases in which symptoms, sometimes many, can overlap making it difficult to give the correct diagnosis and treatments. 

      My advice would be: 'KEEP THE BALL ROLLING'. DO NOT let Doctors turn their backs on you, keep up on GP appointments, bring urine samples every time if possible. Ask questions and make suggestions. Do as much research as yu can do, INFORMATION IS POWER.

      Show the docs you are taking every measure YOU can do, such as: 

      -Eat Healthily -Make good lifestyle choices -IF you can, excersise -Try different diets -I'm seeing a Psychologist, I wish I did sooner. Daily pain has a big impact on your psychological wellbeing. -Any other things you can think of then try! Show em' what you'v got! 

      DO NOT STOP! smile 

      I'm here if you or anyone needs a private message or more details on my journey then just ask, I will be here for you! Keep me updated on your progress.

      Love, Ollie x

       

    • Madison1178
      Madison1178 ollie515

      Posted

      Hi Ollie,

      Thank you for encouraging us to keep going! I am at my wits end, mentally exhausted and currently unable to work because of flank and abdominal pain. It ranges from severe to dull with sharp pains down my groin. My story started by having a UTI which turned into a kidney infection, which is how they found stage one renal cell cancer on my right kidney. I had a partial nephrectomy August 2016. Things were going well although it was a slow recovery, I returned to work after 6 wks, then 4 months after surgery all of the sudden my right side started hurting again. If I drink alcohol the next day my whole right side would be killing me, if I drink a lot of fluids it would hurt more. The nephrologist sent me for an MRI which indicated a post surgical kink in my ureter. They sent me for a renal scan, Ivp with contrast as well as a nuclear scan which all came out normal! They ruled out a gallbladder issue with a HIDA scan. Blood testsare normal but I still continue to have some blood in my urine cultures. The only answer I had was the MRI but the kink is not showing on any other tests. I am still in a lot of pain and I feel like giving up on my fight to find out what's going on. I was a healthy 34-year-old female with no health issues whatsoever. My life has been turned upside down. I don't have any answers. The doctors are acting like the pain is in my head! It has progressively become worse, besides for right flank pain the right side of my abdomen is extremely tender. I have never written on ta form before and am not sure who will see this but could really use some advice right now! Any advice is welcome. Thank you!

    • leighs1212
      leighs1212 amanda33492

      Posted

      Have you had antibody testing done? The psoraisis and sun sensitivity sound like lupus. which also causes lots of aches and pains.
    • a07153
      a07153 ollie515

      Posted

      Hi Ollie,

      I know it’s been over 3 years since your post but I my husband is going through something very similar to what you were describing, and I’m really really worried I’m just trying not to imagine the worst sad his situation is very debilitating, which I’m sure you understand. I was just wondering what happened to you? Have you gotten any answers since? 

      Thank you!

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