I'm trying to find a cure to a insufferable pain that comes without warning and has me bent over when it's at it worst, it's effecting my whole life and relationships.
I have had all the test but the doctor's still can't diagnose me. All they have said is that I have IBS, and ovarian cysts. The cysts are apparently too small to be causing this pain and they don't think it is the IBS.
The pain is always in the same place on the right, and having just looked at where everything is in the body, I can say that it is right above the large intestine towards the front of the body. I know the good news is that the CT scan would have shown if there was any cancer or anything like that, but the not knowing is a horrible feeling.
Do you think there could be something wrong with the large intestines that would not show up in any of the tests? Does anyone experience the same pain that could offer advice?
I've also just read that IBS is neurological, could it be the IBS even though the doctors have ruled it out?
Any help or medication advice for the pain would really help.
i too was thinking possible GB as well. the one big thing when it comes to esp the upper GI area is everything just IS very much interconnected by esp the bile ducts but there are other things too like blood supply, crossing nerves that can make a person 'feel' like something is definitely stemming from one side when it can actually be stemming from another area or specific organ completely. the one thing that i have had to have in the past becasue i have polycystic kidney disease that has heavily also impacted my liver and is currently generating very enlarged intrahepatic bile ducts(this alone was caught upon my yearly ultrasound) and very larger than should be common bile duct is whats called an 'MR cholangiogram".
this test REALLY does show like everything from the upper GI and doen into the at least upper intestinal area really well. you simply drink this contrast agent(looks like coca cola but soo not,lol) that really helps to best highlight possible problem areas in your upper GI where most strange pains and issues actually stem from thru how far that contrast runs thru the intestinal area too. since you are NPO before this test, it does giove that contrast a better chance to get further down into and beyond the colon and into the intestines.
since something is most definitely generating what sounds like some pretty crazy stabbing levels of pain, it needs to be tracked back to any possible generators, and that would include your upper GI as well as all the organs within it too.
honestly, what i have found mostly over the past 11 years or so, that actually started out with my youngest son actually being born going into liver failure and we did NOT have the slightest clue til he was very very advanced(age 12 he presented vomiting blood) is that ANYTHING is indeed possible to just have going on inside anyones body that you just do NOT know even exists til it either starts to present itself with symptoms or it gets picked up on some type of a scan as an 'incidental finding' when looking for something else. have had this occur MANY times since my son got sick. i did not even know that i was born with this stupid PKD going on that WAS the reason for my sons liver failure til HE got sick and we found out he had to have inherited this from me or hubby. i was 40 years old when i found out what i had been living with AND with still perfect labs to boot. really unreal.
while that hida scan would be good, i really do think that getting that MR cholangogram would simply take a good in depth better looksee at all of the upper GI areas and into where your main pain area is stemming from too. just considering you stated this 'appears to be' right ABOVE that lg intestine would kind of place this around the lower lobe of the liver or even within the stomach are too.
when you stated that you 'had all the tests" just exactly what specific testing have you had done and do YOU yourself have any and all copies of every single test result that was done? if not, get every single result so YOU KNOW you have actually been told everything that any patient just needs to know(this just DOES matter in some cases in a huge way). some docs will 'only' tell a patient what 'they feel' is or is not pertinent to that specific part of the body and nothing else that could be a possible indicator that they simply are NOT at all experienced enough to even know or realize that whatever particular finding popped up IS an actual underlying symptom of 'something else'? unfortuentely it DOES come down to specific types of testing ordered and the docs overall knowledge and experience in truely being able to interpret those results as well to even GET a solid dx on any real condition we may have. TRUST ME on that one.
but knowing what you HAVE had done and esp any irregularities that showed would help us better to try and help you hon. and DO obtain ALL test results if you have not yet done so. they are THAT crucial to YOU and even finding a true dx. and that MR cholangiogram? i seriously would ask your doc about it. are you being treated by your primary or an actual GI doc with much more knowledge and experience than any primary could possibly even have? that treating doc truely DOES matter tons when looking for specific problems in 'their areas of expertise", vs any given primary. they simply do see more and know more, and know what really specific types of testing will give them the needed info based upon YOUR ongoing symptoms as well. let us know how things are going,K? good luck, FB
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.