For over 2yrs I have been getting increasingly worse and more frequent episodes of severe pain in my left flank (just below my ribs) and round into my back and have just been fobbed off by consultants because every time they get round to doing any tests the episode of pain has gone.
It comes on over a few hours, firstly with difficulty peeing, no pain or burning, just a case of i want to go but only pass a dribble of cloudy pee with with bits floating in it. After an hour or so the pain starts quite suddenly and I feel nauseas, my calves/ankles get puffy and I still cant pee properly even though I keep feeling like I need to go, I also get very itchy and sometimes feel quite dizzy when going from laying or sitting to standing.
I can't get comfy, if I stand up its worse than ever, if I lay down I can only get a small amount of relief by kind of stretching myself a little. I can't sleep for the pain and pain relief has done nothing to help at all. The attacks can last several hours sometimes a few days. When the pain eases I notice that I then spend the next day/2 days peeing non-stop.
I am unable to work because the pain is so severe and unpredictable and I am getting very depressed, I just want to be pain free.
When i have had episodes of pain I have been to the doctors the following day, they test my pee - all clear, they poke and prod - no pain, so I get told nothing is wrong and its probably just a small adhesion from past surgery.
Have been hospitalised twice, most recently july this year. Was admitted on the friday at 2am, given morphine for the pain (which helped a little), put on a drip which made it worse, and after 3 days eventually had an ultrasound which was clear, but the day before they did that the pain had stopped again anyway!
It seems that when they get around to testing me for anything its always too late and the p[ain has gone and they think I am a fraudster (or at least thats how thy make me feel), despite telling them about the peeing thing connected to the pain I have not seen a urologist, because its abdo pain they refer me to an upper GI surgeon who says nothing is wrong.
Have my next appointment on 6th sept, the GI surgeon wants to discuss me coming off of my pain relief, the thought of which terrifies me.....
Am I really going mad or does someone on here recognise these symptoms?
A friend of mine in germany told me it sounded like something called dietl's syndrome/hydronephrosis.... all I know is I am scared and in pain and so very frustrated and glad I have found this site.
Many thanks
Last edited by skinnypins; 09-04-2011 at 03:03 AM.
Reason: spelling errors
Ok guys and gals. had another episode of severe pain as I have described above. Was very bad from the 28th august through until the 1st sept. i noticed this time that I got quite bad heartburn alongside the nausea etc. Trust me to get sick over a Uk bank holiday.... Didnt ring Gp as would not have been able to be seen anyway, didnt go to hosp A&E because they keep fobbing me off saying nothing is wrong....
Found myself taking 4 doses of 60mg of codeine phosphate a day plus 4 doses of 500mg paracetamo ( and still no relief from the pain) , metoclopramide for the nausea (which didnt work at all) and 20mg of omeprazole (for the heartburn) daily and the pain was so severe that I couldn't move and was very nauseas, waking up in the night to pee a dribble and then being sick once I have stood up.....
Have noticed that my sock line has gotten so tight when my ankles puff that on my left leg (which seems to puff up more than my right) actually bruised on my sock line! I found also that I am just not healing very well, a couple of scratches on my left leg from a bramble have still not healed properly and yet I got them over a month ago!!
Was really hoping one of you might have read this and recognised the symptoms so I could push my consultant a bit when I go to see him in 2 days time......
just wondering if they have EVER done just a simple and very easy ultrasound ON both kidneys/bladder to rule in or out just some of the 'possibles there? even if your pain just suddenly goes away when it comes to 'test time' the fact remains you DID and ARE having episodes of severe pain and problems urinating. and that 'should be' MORE than enough to at least get that good US look, or any other possible testing that HAD been ordered at one time but not done just to see if you could even have stones in there?
this is actually what this kind of sounds like just given the pain kind of coming and going and the overall severity. and stones can range from like a grain of sand to pretty flippin large at times too. they can also get 'caught' in any area of the urinary tract as well. even within the bladder which could impair your ability to even pee normally too. some will pass if they are small enough while others can generate alot of pain while they TRY to pass but can't. so the pain becomes much more episodic like yours seems to be.
i would just push like heck at this point, at least your primary doc to send you FINALLY for at least that one US, just to finally get a good 'look' at them and the rest of that tract as well. they do check alot and down to how well your bladder jets are even filling with a renal US done. i have regular US's done every single year to help monitor my polycystic kidney disease and they DO show alot. they would be able to pick up stones in a kidney. how has your kidney function bloodwork been? hopefully they are at least testing that? it IS possible to have more than one medical issue at a time that simply makes things 'appear' like they are all stemming from only ONE actual condition when they are totally seperate. just needs proper testing to rule them in or out as possible contributors.
just keep pushing til even just one doc finally listens to you to get into the actual testing for the reasons why you are actually even HAVING these ongoing symptoms. i DO think over two years of waiting and suffering is more than long enough to finally get something tested and found out. i hope you can get this dxed soon. please let me know what you find out,marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
have my appt tomoz with the GI consultant. despite telling them about the peeing thing they have only dipped my urine once to check for blood and it was normal. Have had no bloods to test kidney function at all and my last ultrasound in july only looked at my kidney to check for stones and that was clear, but by the time they did the scan the pain episode had finished. My pee on a bad pain day is quite dark (orange rather than yellow) its cloudy and has white "dandruffy" bits in it.
Just getting to the stage now where its hard to function normally, tired and feel cold all the time and cant concentrate properly. Im pale and my legs get puffy at will. Really going to push when I go to my appt tomoz because this is ridiculous. I can handle pain if I know whats causing it and can have treatment to sort it out. I had a 20cm right sided ovarian cyst last year, was found incidentally when i had an US looking for cause of my pain. They told me then that my bladder/peeing problem wa because of the pressure of the cyst and the pain was associated to the cyst. I had the surgery in april of last year to remove the cyst and ovary and was told the pain would go after that was done and the peeing problem too, but it hasn't and has merely gotten worse. On my last admission to hospital july of this year, they thought it was possible appendix, did an xray looking for signs and found nothing, within a few days the pain had stopped and they just discharged me.
I have no history of stones or UTI's, I do have a small hernia below my diaphragm due to gastric band surgery, but that has been checked out as has my placement of gastric band and all is fine there. Funny though, I have been eating less due to loss of apetite but have gained weight.
Anyway, will keep you posted as to what happens tomoz and many thanks again.
Had my appt with general surgeon yesterday. He didn't take me seriously until I pulled the bottle with a pee specimen out of my handbag!
Finally he listened and agreed that I need to see a urologist and will make the referral, tested me pee which when dipsticked showed ketones,protein and blood, so sent off a urinalysis results of which should be in by friday.
He has also booked me in for a laprascopy and cystoscopy on 14th october which he expects will be done prior to me actually getting an appt with the urologist due to waiting times.
He has put me on anti-biotics (just incase it turns out to be an infection, but he thinks its a blockage somewhere) and left me on my codeine phosphate for pain and metoclopramide for the nausea.
He mentioned maybe having to use Ace inhibitors depending on my surgery outcome?
In the meantime I have been told to cut down levels of protein and sodium in my diet, and when I get my next episode of severe pain I am to go straight to the A&E dept and my surgery would be brought forward as would my seeing a urologist.
I know there is not a chance of going 6 weeks without the severe pain (thats wishful thinking) so its a matter of a few days to a week before I end up going to the hospital and hopefully a little wiser as to the cause of my illness.
Will keep you posted and thanks again for the advice.
whenever they do an actual urine dip, they are also looking for more than "only' blood. they are also checking for any ketones(indicator of possible diabetes or poss med reactions too) or seeing even a "trace' or protien in there too is usually the very first more unerlying indicator of having an actual kidney type disease too. that is the 'usual' in what gets looked at with the actual 'dip' anyways.
if your pee is actually more orange, it can be from being pretty dehydrated or potential blood in there too. just becasue one test did or did not show it when it WAS tested, it 'only' tells at THAT particular time you did not have any in your urine, not actually what 'could be' going on NOW,ya know what i mean? everything that you are describing just really DOES sound like possible kidney stones. if they found even calcifications within that kidney during a US, they could also turn into more solid stones or even the calculi could be every once in a while just trying to pass. from what i was told when i had a R kidney stone, they told me that even the stones that are like only the size of a grain of sand can generate pain and bleeding only becasue the outter part at times can be very sharp or with many different angles on it? so it can actually kind of make little cuts into the ureter while its being 'contracted down to be expelled.
you can also have crystals in your bladder too, not to certain about the actual kidneys tho. i just really DO think you need the help of a good urologist or nephrologist to figure out the only being able to pee a small dribble at a time and what the heck those little 'bits of stuff' that you are actually consist of too(those two things should be MORE than enough to get you that referral to the uro doc). if you cannot actually pee properly, you also cannot properly rid your body of the toxins built up in what the kidneys filter out into the bladder to be expelled either, and thats not a good thing. you just seriously DO need and deserve SOME answers here and 'appropriate care hon.
doing a contrasted CT on your kidneys/bladder (renal) would show up any stones or possible other issues that even as good as USs can be, may not have been able to show itself with only US. some things we can have inside our bodies and depending upon just what those things are made out of really is the key as to what will or wont show up on any given type of scan given since they use different ways to obtain the scans at all? you have the ultrasonic waves as in ultrasound/sonogram, radiologic as in CT and x ray, and magnetism as in MRI. so not ALL scans will just even be able to pick up on particular stuff, or even pick it up in the exact same ways either.
but with the ankle edema along with your other symptoms, i seriously would push your doc for that referral to a good uro if at all possible. while 'something' could be going on because of that lap band surgery too, you need to find out the underlying 'whys' or what is a normal bodily function just not being 'normal. at the very LEAST here your primary could give you a full and complete blood lab work up that would show your metabolics, your kidney and liver functions, just to make CERTAIN that all of your needed organ functions are just all within the 'normal ranges". this 'should realistically have taken place by now(to check how GI is doing), esp kidney functions given symptomology, seriously. it just makes GOOD common sense. they just really do need your overall 'baseline labs" to see if any areas are having function problems then go from there. if you are getting nowhere with your current primary, you may have to switch just to get your NEEDED tests and just absolute needs met here at all. some primarys are great at actually WANTING to know whats going on with their own patients and others can just be plain lazy and not give a crap either. not every MD even should be an MD, ya know?
but if this were me right now, i would be pushing for labs and a referral to the needed uro specialist too. if your doc wont, then fire their butt and find a much more "there for YOU" type of primary and tell that new one WHY you needed to change as well. they would be more likely to really get on top of the testing part and that referal too that way. this current doc is just getting YOU no closer to finding the problem, and that HAS TO change, or who knows what could happen here or how much more horrid suffering(and possible complications) you will end up still having to go thru? just the one mere fact that at times you cannot pee is huge as a symptom of a possible 'blocking' of urine somewhere within that urinary/renal system, and it could be whatever those "things" are floating in your urine that it also appears no one has even looked at any closer or cutured your urine either to see if ANY type of actual infectious process could actually be going on too. there just are a ton of things your own primary 'could be' doing here or should have already DONE for you that i am assuming has not yet even been?
a good or great primary doc is like gold. i have been way lucky enough to have a wonderful one now for over 15 years. and i AM thankful with the ton of medical crappy stuff i have had come my way just in like the past ten years. he has also been my advocate with other docs/specialists i have had to see too, which is also a big part of their job, being YOUR voice/advocate. and you too deserve this level of doc to find out what the heck is going on inside your own body.
i would seriously start getting a bit more demanding with your primary here. just simply ask him "do you KNOW what is wrong with me"? and if he cannot answer that one question, then tell him to please send me to the doc that CAN find out whats wrong. its that basic. i wish you lots of luck here in just getting the needed stuff to find out whats wrong. please do let me know how you are doing SP, marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
somehow your reply AFTER my last post ended up on the first page and not this one?? i had to flip back to even find it since i DID get the usual mail sent when you replied, strange.
well so you DO have all three in your urine now vs before(blood, ketones and also the protien)? i am VERY curious now to see where your function labs are at this point. they also need to be checking your blood sugar(what is called a 'fasting glucose") AND pancreatic enzymes just in light of the ketones in urine? hopefully he is testing everything with blood labs, not "only" the kidneys functions in light of what actually showed in your urine? no matter WHAT actually gets tested from here on out, make darn certain to ALWAYS obtain your very OWN copies of any and all testing results just so YOU have them in your possession, always, no matter what the test is. well at least THAT is getting things moving here for you FINALLY. now they need to start finding outthose "whys' of just what was in your urine that is not supposed to be there. thank god you at least got sent to that GI or you would STILL be waiting for 'something" to be found out. great idea in bringing IN that urine sample hon, never thought of that. it is pretty hard for ANY doc to actually deny there is 'something' in ones urine when they see it right in front of their face? i really do think that WAS the very best possible idea considering what was showing in THAT alone.
i forget here if you mentioned this(certain types of meds just CAN create ketones in ones urine at times too), but just what specific meds are you on(any and all of them) besides the codiene phosphate? they realistically should be taking you off anything with "phosphate' at the end of the label since phosphates too are harder on the kidneys? even pop, esp the colas have a higher phosphate level than what you could be drinking? if you do not drink any pop at all, thats even better. i just drink ONLY water thru out my day to keep my kidneys flushed and stay hydrated with my brand of kidney disease.
just why are they doing the lap when they CAN find out things doing even a contrasted type of renal scan thru 'just' the renal system where they watch the dye run thru THAT system to see where that blockage is(i have had this test done before long ago but cannot for the life of me recall what IT is called)? that laparoscopy(sp?) just seems a bit overly invasive 'just' to find out where your blockage is when it CAN be seen upon a particular type of test(most likely within at least one of the ureters or a stone/something else blocking right IN the kidney somehow which you CANNOT see with a lap vs contrast scan) ya know what i mean? hopefully that doc has some VERY good reasons for that. but i am happy you are finally getting somewhere here hon, really. KNOWING that you just DO have "something not right' going on inside our bodies and no one seems to even be simply doing their freaking jobs is pretty sick to actually do to ANY patient. PLEASE do keep me posted SP. good luck, and good job there too. marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
The following user gives a hug of support to feelbad: skinnypins (09-12-2011)
Thankyou so MUCH again for all the advice and support. Have rung my GP today and I am arguing the point of going through the laproscopy before even having been seen by a urologist, it doesn't make sense to me and because I already have small adhesions from past surgeries (c-section x 3, hysterectomy, cholysystectomy and gasytric banding) I dont really wish to have an exploratory surgery done before they know where they even need to look.
When I called the docs I got confused so I am waiting for a call back. The receptionist gave me my results of urinalysis and said that the doc has marked the results as normal. I am rather confused how that can be, when they did the dipstick it showed trace keytones,blood and protein???
I noted also that I have gained 3kg's of weight since my last admission in july of this year and yet I have hardly been able to eat, i even showed the consultant a bruise round my sockline (left leg) where my sock had bruised me when it got too tight when my ankle puffed up with the last episode of pain. Feel like I am rapidly heading back to square one again.
As for my meds, they said I could have the codeine phosphates or take brufen (wont take the brufen as I am asthmatic and its bad for me), otherwise I have 20mg omeprazole daily, salbutamol and symbicort inhalers for my asthma. Loratidine for hayfever and metoclopramide for the nausea. Currently no other meds and the only non-prescription item I take when needed is paracetamol for the recurrent headaches.
Due to having the gastric band I dont drink anyhting fizzy as it can make the band slip, and I only drink caffeine free tea or coffee and plenty of plain water and a glass of cranberry every day.
Meats taste appalling these days so I have mainly fresh fish and assorted organic veg, so a healthy diet all in all. Don't drink alcohol these days as it rapidly brought on an episode of pain and just isn't worth it.
I am obviously concerned that now they have marked my urinalysis as 'normal' that i wont get the referral to a uroligist, have asked for a second opinion, so it will be a different doctor than my own named doc that will be ringing me back, Im hoping that may help.
if I refuse to have the laproscopy it could be viewed as me not really being bothered or suffering with this as much as I am, as opposed to the real reason of not wanting pointless surgery when the cnsultant said he doesn't think he will find anything anyway, cos he still doesn't think there is anything wrong, darn them, he wouldn't be sat around for over 2yrs in pain if it was him!
Tried to explain that the pee sample I took in was from a good day, and that when the pain is bad it is pretty nasty looking pee in comparison to that sample. Anyways, it proved that i don't have a UTI if nothing else, so they cant fob me off with yet another dose of anti-biotics that end up giving me bad guts and thrush, so at least that's one positive.
In the meantime I am none the wiser and now starting to feel quite angry about the attitude of my healthcare providers.
i don't blame you one bit for being angry here at how you have been treated here or NOT being, and it appears STILL are too being treated AND the completely conflicting info you have gotten regarding your urine dip results as well. someone either dropped the ball here on you, or something just is NOT 'right' here. and honestly, getting dam angry can actually help you to really push things and the inept docs we have to sometimes deal with to just do their freaking jobs for us. so DO use that anger to just get things done. if you allow this to make yourself even a little bit depressed, its much harder for YOU to even feel like 'pushing" the only people who CAN help us find answers becasue it just sucks away your needed energy to just accomplish things at all, vs anger that pumps you up to do battle kinda thing? i have found when i get angery at whats either being or NOT being done for me, or esp my son(the mommy fangs come out,lol), i get soo much more direct with my docs and get more accompished as well. it CAN really help SP, trust me.
and i too would not want or allow ANY more cutting into your body til someone has at least bothered to do the needed scans done along with any and ALL the needed bloodwork too. everytime we have any surgery done, we will end up with even more scar tissue to have to deal with as well, so you ARE very right here in how you are seeing things. waiting to just hear what that uro seriously feels is the very best approach would really be the best possible wait and see type of thing for you to do. even tho the lap leaves smaller incisions, it is STILL cutting into your abdominal where the scar tissue just can be much more profound and can also kind of 'glue together' actual organs in the abdo too with simply too much cutting into and more development of what is even already there and growing from PAST procedures as well. that crap just does NOT eventually go away on its own, it anchors itself to organs then can sometimes continue to keep on growing even more with time..
there just ARE many other options or scans they can do beforoe even THINKING of doing any actual cutting into that already more than likely "inner' scarred abdomen in you. any doc/surgeon should ALWAYS try and go with the less invasive testing FIRST before going to any cutting into any pateint. as long as you just CAN even obtain usefull info with scans, other contrasted testing and bloodwork, why go there at THIS particular stage, ya know? so i am totally in agreement with ya there SP. just stick to that,and hold your ground SP until anyone gives you some really 'good" and more solid 'reason' to do otherwise.
the very first thing i would do here tho, and for many reasons is simply obtain every SINGLE solitary testing result copies just so YOU KNOW for certain what was or was not even documented in them(ESP that insane dip, any and ALL of them that have been done). then at least YOU would have the actual copies of your own tests. i have done this for MANY years starting back in 99 when my son was 'suddenly' presenting with insane symptoms that unfortuently turned out to be about midway thru total liver failure. the labs themselves and just actually having your very 'own' copies also allows YOU to use that initial baseline set of labs and the dip as your "comparritive base(initial)guideline as this goes on with more tsting down the road too? it can just show things that may be getting better or worse with certain functions and or the components found in your dips as well. i do this with ANY test i have or my son. i just kept getting asked sooo many questions about his labs and when it was my turn, the very same crap, that lets face it, we just do NOT even recall in many cases, so all i did was go thru my lil folder of info, and there was that needed info right then and there and the doc can make 'their' copies of YOUR records. put your name(i use lil address labels or write my name ON the report/documents and label them as MY property too), it depends, but just have your name on all you very own documents so if they should get "borrowed' for any possible copies at any docs office or even the ER, you can make certain to ALWAYS get YOUR particular copies of any of your stuff back again to put back into your lil folder. never ever give away to any doc what are YOUR own gotten medical records, since some can be harder to replace.
just always keeping the testing results(and any patient just HAS that right TO them too) along with obtaining what are usually called your docs "clinic notes' too. these just are the little notes(usually just a couple of paragraphs or so) every doc has to make after any appt with any patient that summarizes that particular visit and what their overall 'impressions/findings' just are too re your reason for seeing them in the first place, along with any plans of action he or she decided for you, like specific types of more testing? these, once they are just fully transcribed go right into YOUR personal medical file. i get ALL my medical crap from each and every doc/specialist/surgeons that i just have had to see and place MY stuff into like and expandable file type of folder(also ALL of my surgical records from that hosp that did my surgery that time)? then you can also bring said folder to any new doc appt, or even the ER if something(like severe pain) creates a really solid NEED to go there. then all of your actual test results AND in some cases even more important docs clinic notes are simply right 'there' for any ER doc to see too, ya know what i mean? your last set of like labs that you can place in there if in the ER, THOSE ones from before you ended up in that ER are what would be your 'newer baseline' set they CAN really use to also gage where you once were befroe you needed to come in, and when,while you are there, they would just test agin too, they would have those "comparritives" to also go by. meaning they could plainly see anything that may be different or worse or better than your very last set of tests too. and that really saves them and you a ton of time and hassle.
over the past like 12 years or so in just always obtaining this stuff, and esp with the sometimes chock full of info clinic notes made by docs, i seriously have found some really 'interesting info' that i was NEVER ever told about or in esp my sons case, many different types of actual mistakes in his and my records too. so this not only allows you to read what is in this stuff, but also making dam certain that everything written about you along with any test reports are even simply accurate too. this also just allows any patient to also kind of fill in certain 'missing pieces" of info as well. this truely IS just the very BEST ongoing thing that any actual patient, esp with some type of as of yet undxed or ongoing with symptoms patient to keep track of everything that has been done and what any outcomes simply were, and ESP what we get told too. this then also becomes a very critical part of YOUR overall medical history as well for you, as well as for any children you may have too that could end up with something similar, simply becasue certain types of the more 'odd/bizarre' crap that we can even just 'have found' inside of our bodies that tends to esp shows itself between the third to fifth decades of life, when congenital(either A condition or even specific "ways" that your particular anatomy is set up too that can make certain problems much more possible or likely to just even occur), is 'usually" the time it shows itself over a longer period of time. but then you just 'have this' stuff to help you and potentially them as well.
there just are many many 'conditions' that can be there at birth that no one actually even has a clue about are EVEN actually running in any given family history til things reach that more impactful threshold like my PKD? never knew i had this ongoing(getting worse only on the INSIDE and outside of the actual organs but with NO lab changes for many years til two years ago) born with kidney and liver disease til my son became gravely ill with it from a mutated form of PKD that despite his crappy stuff showing up in him at age 12, mine i still had no clue about and i was forty years old(ONLY after he got sick and were told the PKD was the TOP inherited kidney disease that could also even DO TO his liver what it was and me and hubby had to be US'ed too cuz ONE of us just HAD to have this, i found out sickenly i gave it to him without even knowing i had it since if YOU have it, your children run a 50% chance of getting it too), with still perfect labs but my US looked like my kidneys and liver were swiss chees with huge globs of cysts in and on them. blew me away let me tell ya. then my sister got US scanned after i told her what I happened to have and she has this crap in the very same organs too and never knew either and she was 41at that time already. go figure..
but all in all i DO feel you are doing the right and the most appropriate stuff here given the option they are trying to get you to do. i cannot even fathom the 'hows' in realistically even getting the more appropriate and needed info within that renal/urinary system by only doing that lap? a good contrasted type of renal CT or something similar i would think would make better sense here. least invasive FIRST whenever possible. hopefully you CAN just get their minds to change here SP(or seeing that uro FIRST for their overall opinion. they just know soo much more) and actually find out all of what is simply needed to be found out. 'something' caused that urine dip to be what it actually was, along with the more episodic type of pain and blood in your urine with 'bits of something' too ya know( all of THAT has to be generating from somewhere)? just keep pushing everything and everyone til those real needs YOU just have get totally met. good luck, marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
For over 2yrs I have been getting increasingly worse and more frequent episodes of severe pain in my left flank (just below my ribs) and round into my back and have just been fobbed off by consultants because every time they get round to doing any tests the episode of pain has gone.
It comes on over a few hours, firstly with difficulty peeing, no pain or burning, just a case of i want to go but only pass a dribble of cloudy pee with with bits floating in it. After an hour or so the pain starts quite suddenly and I feel nauseas, my calves/ankles get puffy and I still cant pee properly even though I keep feeling like I need to go, I also get very itchy and sometimes feel quite dizzy when going from laying or sitting to standing.
I can't get comfy, if I stand up its worse than ever, if I lay down I can only get a small amount of relief by kind of stretching myself a little. I can't sleep for the pain and pain relief has done nothing to help at all. The attacks can last several hours sometimes a few days. When the pain eases I notice that I then spend the next day/2 days peeing non-stop.
I am unable to work because the pain is so severe and unpredictable and I am getting very depressed, I just want to be pain free.
When i have had episodes of pain I have been to the doctors the following day, they test my pee - all clear, they poke and prod - no pain, so I get told nothing is wrong and its probably just a small adhesion from past surgery.
Have been hospitalised twice, most recently july this year. Was admitted on the friday at 2am, given morphine for the pain (which helped a little), put on a drip which made it worse, and after 3 days eventually had an ultrasound which was clear, but the day before they did that the pain had stopped again anyway!
It seems that when they get around to testing me for anything its always too late and the p[ain has gone and they think I am a fraudster (or at least thats how thy make me feel), despite telling them about the peeing thing connected to the pain I have not seen a urologist, because its abdo pain they refer me to an upper GI surgeon who says nothing is wrong.
Have my next appointment on 6th sept, the GI surgeon wants to discuss me coming off of my pain relief, the thought of which terrifies me.....
Am I really going mad or does someone on here recognise these symptoms?
A friend of mine in germany told me it sounded like something called dietl's syndrome/hydronephrosis.... all I know is I am scared and in pain and so very frustrated and glad I have found this site.
Yes they have looked for kidney stones. On saying that, they didnt do a scan until 2 days after an episode of pain had already stopped and at that time the scan was clear, so when I saw the consultant again on the 6th of this month, he merely referred back to the last US and CT scans in july and said there is no reason for my pain.
As I have said this has been ongoing now for over 2yrs, intially i would get an episode of pain around once every couple of months and then they gradually became more severe in pain with associated symptoms and more frequent, so nowadays I get an attack of pain anything between 2 and 4 times a month but have genaral aching and milder discomfort daily, almost like my body is taking longer to recover/struggling to recover from an episode of pain, and before i know it I am back having another severe attack. Constantly tired and nauseas with the bad taste in my mouth all the time now, whereas that used to just be when I was very bad.
I have to provide another sample of urine for testing, after the consultant tried to say the last one was contaminated. My Gp suggested to wait until I am having a very bad day to take the sample, so that it can be seen at its worst for testing, and that way the consultant might take the problem more seriously.
The only curious news I have recieved from my Gp this morning is a confirmation that my left kidney (the side where I get the pain) was slightly smaller on my July 2011 scan in comparison to one taken in March 2011, but it was noted as being 'unremarkable'.
I am taking the advice of Marcia and requesting copies of all my test results going back to when I first visited my Gp complaining about the pain and urinary concerns and have also written to my local hospital asking them for copies of any results and notes regarding this issue. They dont take kindly in the Uk to being asked for this stuff despite it being in the patients charter that you are entitled to it, i suppose its because they know people will find errors etc and may decide to sue for negligence, oddly enough I have decided to do just that once I know what the cause is after suffering for so long.
My Gp also informed me that the consultant suggested that I may have a low pain tolerance, and that I may just have trapped wind! Couldn't believe that, they know what major surgery's I have had in the past and they would also know from my notes that post-op I said I didnt need any pain relief apart from the odd paracetamol....
Now I am just in limbo, awaiting the next severe episode of pain and to take the advice of my Gp and to go up to the hospital a&e dept or to call an ambulance. At that point at least I will be seen by a urologist and may get some answers without being opened up for an exploratory op to look in the wrong area!
Thankyou all so much for caring, pain can be very isolating and the support of you all has made such a difference, I was on the verge of giving up and now I have new vigour and determination.
Please keep us informed. Most of us have had the experience of not being listened to about symptoms. We know our bodies and we know what is not normal. I hope your next episode brings about a resolution for you. Jan
Undiagnosed severe left flank and back pain 
Re: Undiagnosed severe left flank and back pain 
