Unexplained right flank pain with no sign of infection. Need help !!!

Treatment and medication
1

Hi All

I have had flank pain on the right side and doctors still don't know what is wrong

It all started in august when I woke up with

an excruciati pain on the right side. I had kidney stones throuhout my teenage years and I recognised the pain straight away ! I ended up at the A&E at 6am and went through urine and blood tests, and also had a CT scan. All results came back negative, no infection but 2 unobstructive kidney stones on the left side. Ironic though because they were completely pain free. I came back home with painkillers. Within the following days, the pain persisted but I didn't get worried because when I had kidney stones in the past, I always got this residual pain for a few days. So I carried on with life

however, after a week or so, I kept having sharp pain on my right front abdomen and sensation of compression around my right kidney. I went to my GP, he called the hospital I was discharged of to have further details about my CT scan. He found out that my appendice was normal and that I had a cyst on my right ovary. Back to the hospital, admitted in acute gynaecology where I had more blood and urine tests and an ultrasound (internal, external, the full pack !!). They did confirm the ovarian cyst but they were not the cause of my pain. My symptoms and the location of my pains pointed more towards the kidney and urinary tract. The day after, I had a KUB ultrasound which showed nothing. Everything was normal and still no sight of a kidney stone !! Frustration started...

I then went back to my GP to get an urology referral. I saw the urologist a few weeks later. In th emeantime, the pains were still there, as well as a loss of appetite, occasional vomiting and diarrhoea, fatigue, reduced mobility as I was in agony whenever I moved. I also nearly fainted once and had what seems to be a very bad apnic attack (shaking for nearly 3h !!!).

When I saw the urologist, he prescribed more bllod and urine tests, a CT scan with contrasts and an MRI of my spine (to rule out a neuropathic problem). Everithing went back normal !!! More frustrations...! So he made a referral for a pain management consultant. At this point I was taking Diclofenac (anti inflammatory), buscopan (anti spasmodic) and codeine (painkiller). On top of that the consultant added pregabalin (for nerve pain). The mix seemed to work for a couple of weeks or so, so I was seeing things more positively. However, at some points, when I started feeling better, I gradually reduced the medication as advised by the doctors, one drug at a time. It started well for the first few weeks, and then it went all wrong. After I stopped the last drug,the anti inflammatory, the apin came back within 4 days, full on ! So I started to take the anti inflammatory.

Since then, I cope with it and codeine occasionally. It is very strange because I can have a good week with little pain and suddenly it just comes back out of the blue, or after some activities (walking fast, standing up for more than 1h, running...). I still can't bear to lay on my right side.

I can identify some patterns in the frequency and the kind of pain: more sore on the front right flank in the morning, dull ache around my kidney at mid day til the evening when the pain seems to spread on my flank and across my back, like a burning sensation.

However, lately, I started to have occasional stabbing pain on the kidney area. This is extremely painful and worrying.

i will see the urologist in afew weeks and I am hoping he will do a more thorough investigation. So far, as the scans and tests show nothing, his strategy is to try different medications to ease the pain.

I am so frustrated and confused by this mystery illness. It has been more than 3 months and has impacted on my professional and personal life. I can't keep going like this !

I am desperate for answers either from professionals or patients having similar symptoms.

Please HELP !!!!!

2

I went through some incredible pain, also right side...turned out to be internal shingles...carried on for about four months.

hope you figire this out.

hugs

3

Hello. I’m experiencing pretty much exactly what you have described... I had one kidney stone for the first time 6 months ago with which the pain lasted almost 5 weeks. I am now 3 weeks into this episode which I went to the ER assuming it was kidney stones again as I recognized the specific pain immediately. But as you said, it is slightly different this time as it moves to the front just at the bottom and slightly below my ribs and is also sore at the side and then is in the flank area and moves up sometimes. It’s hard to sleep on my side at all. Sometimes is even sore when I bend over. CT Scan, Ultrasound and all labs keep coming back normal. I’m desperate for relief and wanted to know how things went with you and if you maybe had any advice or information for me. 

I pray you are feeling better.

Thank you in advance, 

Tara 

4

Did they ever figure out what was wrong?? I am currently experiencing the same kind of thing. It’s been 4 months and they still don’t know why I have pain in my right side and lower back. 

5

Unfortunately they are still investigating and we haven’t come up with anything concrete. I am still in pain. Someone suggested ‘internal shingles’ but the doctor here is uneducated about that so I’m not sure he will even look into it.... I wish you the best. Let me know if you get anywhere with a diagnosis and I will do the same. 

6

I’ve had exactly the same symptoms! Since September (‘17). I’ve had kidney stones on both sides, and just had surgery for a kidney stone a yr ago in my left, so, like you, I knew the pain well, but ER told me no stones. Many appts later, nothing. Urologist is baffled. IVP showed “prominent uterus”, but that could just be the norm for me. OBGYN appt is in a few weeks, and appt w/gastroenterologist is next month. I hope it’s not all just a waste of time. Meanwhile, I sit and hold my side most the day trying not to laugh at anything or sneeze or cough or fart...

7

The past three days I've had a dull but very significant ache/pain in my lower right back, I have had back issues before disc issues and things that have put me out of action for a month a time, injuries tightness and muscle spasms, at first I thought it was one of those but the pain is deeper( I think) and has left me having sleepless nights, I don't know if I'm being paranoid...recently I had an MRI on my back for injuries, something came up for my kidneys, my g.p has now looked back at 10years of blood tests and my functioning has been around 50 when it should be 90...I have an ultrasound this week coming, g.p said not to worry as I've had no other symptoms, and sometimes some people just function different or along those lines...anyhow, I'm worried about this constant ache, I've tried to stretch and manipulate it to see if it'll go but nothing let's up, I've not felt kidney stones before don't think I have any uti, I figure I may need another g.p appt, is kidney pain a serious discomfort or what I'm asking is how would you describe the pain???

8

Hi

Sounds like you have exhausted all imaging and blood tests.  I have suffered with unexplained flank pain off and on for 20+ years.  I had a bowel resection in the early 90s and within a year I started having unexplained flank pain-- sometimes on my left side-- sometimes on my right. It was sometimes quite painful and I tooks Vicodine for years off and on.  My doctor finally concluded it was caused by adhesions (scar tissue) on the reconnected bowel tissue. He felt sometime the adhesions would drag over or against other bowel sections and create pain.  Sometimes the pain lasted 2 months and sometimes just 2 or 3 days. I asked about surgical repair-- they felt cutting on it would only create more adhesions?  Dont knkw if this helps-- hope you get to feeling better. 

9

My son's girlfriend has been suffering from right flank pain.. episodic, sometimes dull, sometimes acute. Every blood test, scan, MRi etc has been done. In January they thought it was her gallbladder. While in surgery to remove her gallbladder they saw issues with her appendix and removed it to. She was good for about 3 weeks then the flank pain returned. In January she was diagnosed with pancreatic divisum but only 5% of people with divisum have pain from it and surgery is risky. They are looking at that again. Ran autoimmune panels, checked for hepatitis... no and no. 2 days ago they were prepping for divisum surgery and some doc on staff pulled the plug. Next thing they're wanting to send her home with fybromyalgia meds! No! There are tests that indicate something's wrong (liver enzymes up some). Saturday the discussion was sphincter of oddi (2 specific tests need to be done for this...still in discussion). After 4 days of asking for a Urologist, finally saw one today. He is going to test for Nephroptosis. Look it up. Key is a scan with dye...while patient is in pain...both laying down AND standing up! It's also called floating kidney.

She was hospitalized 3x in January which culminated in removal of gallbladder and appendix. Been in the hospital this time since February a 28. It's now March 4. We have all been adament (she, my son, her parents) that there is a diagnosis to be had and she is NOT going to settle for 'pain management' and narcotics (classic Western medicine answer). Will post more when a firm diagnosis. Don't settle for only 'pain management'

10

Hi there, have they ever checked her pancreas? I know people that have pancreatic divisim ALSO have chronic pancreatitis. And unfortunately the treatment for chronic pancreatitis IS pain management and enzyme replacement. I have chronic pancreatitis myself and it is so very painful. Pain 24/7. I would not be able to function without my pain meds.

11

How did you get the diagnosis of internal shingles? Meds help?

12

I have the exact same pain and symptoms and I have been diagnosed with fibromyalgia.

13

just saw your post. Thank you for your reply. She was ultimately diagnosed by a neurologists with POTS Syndrome postural orthostatic tachycardia syndrome. Had never heard of it. A doc friend of mine sent me this link: https://myheart.net/pots-syndrome/pots-symptoms-signs/

She was also diagnosed with Celiac disease and Hashimotos. POTS is supposed to be reversible with PT and specific exercises and she is working with an integrative medicine doc on the Celian & Hashimotos. Thank you for reaching out and good luck to you!

14

One of the hospitals - the one that was moments away from prepping her for pancreatic divisim surgery, then diagnosed her with fibromyalgia. Thankfully, one of her doctors then referred her to a neurologist and she was correctly diagnosed with POTS Syndrome. https://myheart.net/pots-syndrome/pots-symptoms-signs/   along with Celiac disease and Hashimotos (both autoimmune). She is doing PT and exercises for the POTS and its supposed to improve and working with an integrative med doc for the autoimmune.

IF you are not sure fibromyalgia is accurate keep searching!

15

Hello all, so glad I found this post!

I have been experiencing rite upper abdomen and rite flank pain for months now. The pain comes and goes at will and can be sharp,dull and almost a sizing sensation. The pain can go from my middle rite upper abdomen down my rite side to the back. Its absolutely driving me crazy and at times can be very painful. The doctors have run very blood test imaginable,ultra sounds,MRI's,CT scans,Colonoscopy,Endoscopy and the list goes on.To date all test have been negative and they don't seem to have any Idea of the cause. Hoping someone in this forum might have received some answers or at least some advice on how to deal with the pain without going crazy!LOL

16

Don't know your age or gender but a couple out of the box suggestions to look into are POTs Syndrome (my son's fiance was diagnosed with this after several hospital stays and removal of her gallbladder and appendix...all in 2 months time. Another suggestion to Google is Floating Kidney. Good luck

17

I am confused. How does POTS relate to right flank pain? I too have had unexplained right flank pain that varies in severity and has at times gone away for a period of time. I have currently been dealing with it for 4 months. I have not seen a Dr as I have been hoping it would magically disappear as it has done in the past.

18

Look up Loin Pain Hematuria (LPS). Unexplained flank pain, unexplained blood in urine & kidney stones.

19

im so happy I came across this as I have almost the exact same symptoms as you. I am a 20 y/o female with a diagnosis of multiply kidney stones in my left and right kidneys(biggest being 2mm). I experienced passing a stone for the first time at age 17. It was classic stone symptoms; extreme flank pain, vomiting, & blood in my urine confirmed by CT scan. Before the beginning of 2019 i had passed about 3-4 stones a year. I followed up with urology for a 24 hour urine test and stone analysis which showed calcium oxalate stones and high levels of calcium, phosporous, and sodium in my urine. In January of 2019 I returned to the ER for flank pain which I was sure was a stone. ultrasound determined I wasn’t passing a stone and said I should not feel any pain from the stones in my kidneys. I was sent home with antibiotics for a UTI. Ever since this occured I have been experiencing left & right flank pain chronically out of no where for seemingly random periods of time. Its a severe stabbing pain similar to the pain of passing a stone, but not quite the same. I have to go to the er at least once a week if not more, i’m treated very poorly because there is seemingly no cause for my pain. There is always blood in my urine and I’ve been on antibiotics 3 times in a 30 day period to treat UTI’s. I’ve seen numerous dr’s and am wanting to go to mayo clinic. If anyone reading this has similar symptoms or answers please reply to this post.

20

look up LPHS loin pain Hematuria syndrome as well as Nutcracker syndrome. not sure where you are but Dr Sollinger and Dr Redfield at University of Wisconsin champion an effective protocol. there are Drs in Utah, Calif (san Diego), NC (Duke) and possibly TX (Dallas) following this protocol now.