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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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  • wendy812
    wendy812 stefxgx

    Posted

    My daughter has similar symptoms that have lasted since April 2015 to now November 2015. did you ever find out what it is/was?
    • amanda33492
      amanda33492 wendy812

      Posted

      Wendy,

      Did you happen to read through the comments? I'm curious if any of this sounds similar to your daughters symptoms?

    • wendy812
      wendy812 amanda33492

      Posted

      Yes, I did.  Not floating kidney.  Had IVP 2 months ago.  images showed "blurred filling" on the left side so ordered cystoscopy and uteroscopy with contrast injected internally from bladder to kidney.  They did that yesterday.  Saw nothing only when she woke up from the anesthesia she was in excruciating pain.  We had to wait in recovery for 6 hours before we could get her stable enough to go home.  They've now ruled out anything having to do with her urinary/kidney system.  They said she may have a pain management problem.  I don't agree since the pain started long before she started taking percocet.  I'm now trying to figure out what else it could be.  Found Diverticulitous has similar symptoms.  Looking into that now. She was seen by a gastroenterologist but he did upper GI tests.  Will look into lower GI.   I just can't believe I have to be the only one trying to find an answer.  Incredibly frustrating watching your child being tortured with pain that no one can fix.  We're desperate to find an answer.
    • amanda33492
      amanda33492 wendy812

      Posted

      God Love You for Your Determination!!! It is soo Frustrating when You Know in Your Heart that Something Is Wrong - Only to be Dismissed by Those Who Swore to Keep You Healthy!!

      My parents and Husband "Wanted" to Believe me and most times they did, but after 7 Years there were times of Doubt and that continues to Haunt Me... Even though everyone was supportive I still hear the few comments "Are You SURE It's Real Pain and hasn't just become a Habit to Think You Hurt??" OR "Have You Tried Exercise and Not Taking the Meds to See If It's Just Lack Of Activitu?" ... UGH!!! I WOULD Have a Million Dollars if I had a Penny for every 'Bit if Advice' I was Given! 😑

      Hang In There and Just LOVE HER - And Tell Her DAILY That You Are With Her!! (Sometimes we Know It, But Need To Hear It!) 😉

    • amanda33492
      amanda33492 wendy812

      Posted

      Sorry, forgot to ask... With the IVP - Did they Have Her Change Position from Laying To Standing and Take Images After Emptying her Bladder?? *That was My Defining Picture!! Once I emptied my bladder it Dropped Like a Rock - On To My Hip! Stretching the Ureter and Pulling my Spine in the Center While Pushing on my Lower Back *Creating a Nice 'S' in my Spine*
    • wendy812
      wendy812 amanda33492

      Posted

      Yes, they did have her both laying down and then standing.  Between the two however, she had an allergic reaction to the dye and had to be rushed to the ER to be treated for that to get her breathing back to normal.  Once she was stablized, they continued the test with the standing portion of the xray.  The report was definitive that there was no movement of the kidney from supine to erect.  Your experience sounds justs as horrible!  I was really convinced at one point that the floating kidney was her issue as well, and it was a challenge to get a dr. around us that could perform the test.  Took 2 months!  Glad you got yours treated though!
    • amanda33492
      amanda33492 wendy812

      Posted

      WOW! I am Soo sorry she had to endure that! She's on my Prayer List!

      If the Moderator will allow it, can you mention the Doctors name that ordered the test? I know there's soo many in the UK looking for someone to do the same for them... Unfortunately my only resource is my Surgeon here in the States 😉

  • vonda02571
    vonda02571 stefxgx

    Posted

    I realize this post is a bit old. But wanted to share my story in hopes there could be a thought for you. Over about last 15 years I have had left low abdominal pain .started here and therre and became more frequent. Once a month I would lay on heating pad for 5 days. with what I thought were menstruel cramps and this left side pain. Ended up having hysterectomy but they found no reason for all my pain in that. but it worked for awhile. Then I started getting the left side pain again about 6 months later. not bad just there. last 2 months got worse and the for 3 to 4 days a week I was having those menstruel cramps..my ovaries hurt but how was that possible cause I have none of that stuff anymore. But I just dealt with it cause I know my Docs would just think I am crazy as always...there is nothing ever wrong with me according to them. This last episode though was going on for 3 days and just kept getting worse. also 3rd day I started having..towards the end of peeing it was causing sooo much pain. Anyway went to gp and they sent me for CT after hooking me to morphine which could only get me to a 4 on pain scale. So they said I had Diverticulitis and put me in hospital. But the left side pain is a big thing for it but I would imagine you would have been checked. Anyway I dont know what of all my symptoms go with what but then when I got home from hospital I got a call saying I have Bilateral complicated Kidney cysts. Have Mri for that in a few weeks but no one has really talked to me about that so I am a bit concerned. Thats probably what was causing the pain at the end of peeing bit idk cause since the antibiotics from the diver it has been relieved. so hmmm. Finally ate some solid food yesterday after liquid diet for 8 days. that food just seems to feel like it is sitting in my stomach.

    Idk if your problem was resolved. I rad what seems like 50 posts but I should have read the lasts..lol.

    Hope you are better after all this time

    • amanda33492
      amanda33492 vonda02571

      Posted

      Have you heard of Nutcracker Syndrome or Nephroptosis? Both can be common for Left sided Flank Pain Radiating into the Lower Abdominal (Ovary) Area ... Misdiagnosed Most of the time without a STANDING VIEW during Xray or Scans
  • vonda02571
    vonda02571 stefxgx

    Posted

    Thank you Amanda. I will check into them. I have never heard of either.
  • anna71180
    anna71180 stefxgx

    Posted

    I had undiagnosed flank pain for a year in my early forties. At age

    58 I had been diagnosed with Churg Strauss Syndrome. After

    taking autoimmune suppressants for 18 months I still get flank

    pain from time to time. CSS is a rare vascular arthritis and is incurable,

    however there is treatment and much success if caught early on.

    See a credible Rhuematlogist who is knowlegeable is CSS. Symtoms

    are very hard to diagnose so ask for blood work to check for this

    disease. Read up on the disease and keep it in mind as a possible

    diagnosis for you moving forward. God bless and I hope you are

    never diagnosed with this potentially life threatening disease. Keep

    in mind that very few doctors know what it is and no where in my

    readings does it make reference to flank pain and yet I get it. The 

    disease affects every person differently and the medical profession

    are only beginning to study and understand it and the treatments in

    the last decade.

    Anna

     

  • Vp1979
    Vp1979 stefxgx

    Posted

    Have them check for IC. Interstitial cystitis. I've had it 20 years. It feels like a kidney/ bladder infection 24/7 365 days a year. I urinate around 60 times a day. I had sudden onset at age 16.
  • michaela18769
    michaela18769 stefxgx

    Posted

    I know this was posted ages ago. However I had the same symptoms for about 8 years with no obvious cause i have no been diagnoised with LPHS - loin pain heamtuiria syndrome. there are also lots of other things like nutcracker syndrome or bergers disease. I hope you got some answer and relief x
  • pinkpenguin83
    pinkpenguin83 stefxgx

    Posted

    I am so sorry for your current undiagnosed condition. I understand to well the pain and frustration youre feeling. I was diagnosed with Endometriosis when I was 22. I had 2 surgeries to remove Endometrium cysts that had formed in my ovaries. The last surgery i had Endometriosis was removed from my intestines and my bowel. At that point my GYN told me that kids were not an option because my tubes and ovaries were so scarred from the disease. I underwent a full hysterectomy in February of 2014 at the age of 31. I since had 2 more surgeries making a total of 3 surgeries in 3 months. In August of 2014 I was diagnosed with Interstitial Cystitis. I had many of the symptoms that you were describing. The frequent urination and the pain in the lower stomach and pelvic region. I even had pain my back and side. I have had 5 Hydrodistensions which is a procedure that your urologist can do to help with the pain and symptoms. The Endometriosis and the Interstitial Cystitis are too conditions that you might want to look into and ask your respective doctors about. They have similar symptoms and are often undiagnosed. I wish you the best of luck in your journey for answers.
    • lynne69494
      lynne69494 pinkpenguin83

      Posted

      hi lve had intersticial cystitus for years, and years before diagnosis despite severe symptoms of pain, in areas you mention, soreness stinging in urethre, bladder, lower tum, severe pain in lower back, diagnoses and meds helped a lot amitrip, cimetidine, larginine, but still niggles frequently and do get frequency with it, l also get pain in hips under butt into top of legs now, though mainly and worse overnight.

      lve two cystoscopies, and can have dilation when needed, but not heard of hydrodistention, what does that involve, l think the uro said l could have cystiat in bladder is hydro same. and have the 5 treatments improved things for you. Horrible condition and anything that helps needed. l also was adviced hysterectomy full, bit older than you, 43, sounds like youve been through it. Any advice appreciated.

    • amanda33492
      amanda33492 pinkpenguin83

      Posted

      I suffered from everything You've Both Described for most of my adult life (Partial Hysterectomy at age 22 from Severe Endometriosis-Adhesions) and the List Gets REALLY Long from age 22 - Current Age: 38 ...

      However, I was Accurately TREATED Last March for Floating Kidney and ALL Of My "Ailments" - Urinary Issues, Constant Infections, Retention, Stinging sensation after emptying my bladder? Right Flank Pain- Weekly I would have A New List of Allergies- Curvature of the Spine - Severe Psoriasis - Increased Blood Pressure - Always On Edge and Emotional (Adrenal Gland Sits on Top of Each Kidney ... Causing Non Stop Overload *CONSTANT ADRENALINE RUSH For 6.5 Years) ....etc...

      8.5 Months Post Op and All of My Ailments HAVE RESOLVED AND I'M "ME" AGAIN!!! 😂

      Please Dig into Nephroptosis and if you Can Be Diagnosed ... You'll Be CURED vs Treated and It's A GREAT DAY!

    • nicole87466
      nicole87466 amanda33492

      Posted

      Hi Amanda, our stories sounds exactly alike. I too have had a hysterectomy for severe adhesions and endometriosis and I've had 5 surgeries in the last two years to remove more endometriosis and try to find my severe right-sided kidney pain. I have all the symptoms you are describing. Did you ever have stuff floating in your urine? I'm at my breaking point and so ready to give up. Hoping my doctor will listen to me when I ask him to order this ivp. Thank you for posting your story! I also have two kids aged 11 and 7. So hard exclamation point nobody understands and I'm just so ready to give up. Currently I have a surgery scheduled at the center for endometriosis care in Atlanta and it's going to be very expensive. I live in Colorado so I have to travel. Can't wait to call my urologist on Monday.

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