Aa
Long term undiagnosed pain.....ideas?
Hello all! Please bare with me while give a brief (well, as brief as possible) recap of the last 9 months of my medical journey..... Maybe yall can shed some light on what's causing my pains....
Back in August 2011, I had what they assumed was a ruptured cyst. A ct scan was done at the ER and blood was found on my pelvic floor. I went home, stayed in bed and took my percocet until the pain subsided. A week or so later, sharp stabbing like pains and nausea began tormenting me. Always on the right side - below my breast (where and underwire of a bra would sit), directly center at top of bikini line and others in the right ovary region.
They thought, since the pain in the right chest area was the worst at the time, that it was my gallbladder. One ultra sound, HIDA scan and stomach biopsy (to rule out other potential causes) later, they decided to remove the gallbladder - DESPITE THE FACT THAT ALL OF THESE TESTS CAME BACK NORMAL. The surgeon said, "If it looks like a duck, and quacks like a duck - then let's shoot the damn duck". Wanting resolution, I agreed to the surgery and had it removed October 2011. I had a very rough recovery, but kept my head up. Positive thinking reaps positive being. I fell a few days post surgery, returned to ER to have xray, and luckily, all was well. I continued recovering, and started feeling a bit better.
The pains never stopped.
A few weeks post surgery, I went out to California to visit friends and hang for a few weeks. While there, I had to go to the ER twice for excruciating pain. As always, all blood work came back totally normal.
January 2012 rolls around and the stabbing pain gets to a point that I just can't take it. I return for the 40 billionth time to the ER. A second ct scan and bloodwork were done - both with normal results.
I returned to the surgeon that did my gallbladder surgery to ask why I was in such pain still. He said, "Well, I guess it wasn't your gallbladder...." I created a ton of new curse words this day. He referred me to a general physician, gave me another percocet prescription and wished me the best of luck.
The general physician was worthless.... No need to elaborate. It was just a waste of time.
Multiple other trips to the ER were made.... Always with nothing less than pristine bloodowork.... At this point, they were just giving me dauladid and sending me home, just as puzzled as I on my mystery ailment.
In April, I had a thought that maybe this could be endometriosis.....bloodwork would be normal...wouldn't show on CT scans...and sever pain. Seemed to fit. I went to an OBGYN. I had an uneventful pelvic exam but he agreed that it could very well be endometriosis and since I had secured partial sponsorship from the hospital by this point, he agreed to do the laproscopic exploratory.
May 10, 2012, I had the procedure. He found endometriosis (a good bit of it,actually) and was able to remove it.
I was so thrilled! I thought I finally had found my solution. I was exilliarated to think that when I recovered from my surgery, that I would actually be DONE with this awful pain ordeal.
Alas, 5 days post surgery - the severe, breath taking, world stopping pain returns. Once again - back to the ER. Third CT scan (in 9 months) and blood work come back normal.... Except for a small cyst forming on my right ovary.... FML.
So here I am now, 2 weeks post-op, 1 week from the last ER trip. I have no leads to what this pain could possibly be. The light at the end of the pain tunnel is starting to seem unattainable. And after months of super high percocet dosage, I'm left with a ridiculous opiate tolerance and unclear mind.
I want the pain to subside. I want my normal life back. I want to be off these awful pain pills. I want to be able to have a job. I want closure.
Does anyone have any ideas at all? My most recent thought was of the parasitic nature....testing for that is next week. Please help, if you can. Support and thoughts are appreciated.
Love love love
- L
Back in August 2011, I had what they assumed was a ruptured cyst. A ct scan was done at the ER and blood was found on my pelvic floor. I went home, stayed in bed and took my percocet until the pain subsided. A week or so later, sharp stabbing like pains and nausea began tormenting me. Always on the right side - below my breast (where and underwire of a bra would sit), directly center at top of bikini line and others in the right ovary region.
They thought, since the pain in the right chest area was the worst at the time, that it was my gallbladder. One ultra sound, HIDA scan and stomach biopsy (to rule out other potential causes) later, they decided to remove the gallbladder - DESPITE THE FACT THAT ALL OF THESE TESTS CAME BACK NORMAL. The surgeon said, "If it looks like a duck, and quacks like a duck - then let's shoot the damn duck". Wanting resolution, I agreed to the surgery and had it removed October 2011. I had a very rough recovery, but kept my head up. Positive thinking reaps positive being. I fell a few days post surgery, returned to ER to have xray, and luckily, all was well. I continued recovering, and started feeling a bit better.
The pains never stopped.
A few weeks post surgery, I went out to California to visit friends and hang for a few weeks. While there, I had to go to the ER twice for excruciating pain. As always, all blood work came back totally normal.
January 2012 rolls around and the stabbing pain gets to a point that I just can't take it. I return for the 40 billionth time to the ER. A second ct scan and bloodwork were done - both with normal results.
I returned to the surgeon that did my gallbladder surgery to ask why I was in such pain still. He said, "Well, I guess it wasn't your gallbladder...." I created a ton of new curse words this day. He referred me to a general physician, gave me another percocet prescription and wished me the best of luck.
The general physician was worthless.... No need to elaborate. It was just a waste of time.
Multiple other trips to the ER were made.... Always with nothing less than pristine bloodowork.... At this point, they were just giving me dauladid and sending me home, just as puzzled as I on my mystery ailment.
In April, I had a thought that maybe this could be endometriosis.....bloodwork would be normal...wouldn't show on CT scans...and sever pain. Seemed to fit. I went to an OBGYN. I had an uneventful pelvic exam but he agreed that it could very well be endometriosis and since I had secured partial sponsorship from the hospital by this point, he agreed to do the laproscopic exploratory.
May 10, 2012, I had the procedure. He found endometriosis (a good bit of it,actually) and was able to remove it.
I was so thrilled! I thought I finally had found my solution. I was exilliarated to think that when I recovered from my surgery, that I would actually be DONE with this awful pain ordeal.
Alas, 5 days post surgery - the severe, breath taking, world stopping pain returns. Once again - back to the ER. Third CT scan (in 9 months) and blood work come back normal.... Except for a small cyst forming on my right ovary.... FML.
So here I am now, 2 weeks post-op, 1 week from the last ER trip. I have no leads to what this pain could possibly be. The light at the end of the pain tunnel is starting to seem unattainable. And after months of super high percocet dosage, I'm left with a ridiculous opiate tolerance and unclear mind.
I want the pain to subside. I want my normal life back. I want to be off these awful pain pills. I want to be able to have a job. I want closure.
Does anyone have any ideas at all? My most recent thought was of the parasitic nature....testing for that is next week. Please help, if you can. Support and thoughts are appreciated.
Love love love
- L
Best Answer
Hi Littleone, I am assuming they tested you for the viral hepatitis? I am experiencing horrible right rib cage pain right now. Mine is more of a constant, burning and pulling pain, and the feeling of fullness in that area, almost like the liver is enlarged, only the tests dont show it. If you do finally find out what you have, please let me know. I am desperate for answers myself. Hang in there and try to be well.
Your symptoms may be related to mastocytosis. Does diet worsen the pain? How are your BM's? Do you have heat intolerance? Are your finger cold, pale? How is your wt, sleeping habits?
I;m going to suggest Sphincter of Oddi Dysfunction as something to rule out as it mimics gallbladder disease. You may have more than one condition which can cause confusion. I could be right off track here but something to look into.
Excerpts from Podcast Transcription - Sphincter of Oddi Dysfunction: An Overview
"Dr. Linda Austin: Now, why have I never heard of this before?
"Dr. Joe Romagnuolo: Well, Sphincter of Oddi dysfunction is a difficult diagnosis to make. In some patients they will have dilation of the duct which you can see on an ultrasound, MRI or CT scan. Or, you might get an elevation of the liver test if the bile duct is obstructed because that is what drains the liver.
Or, you may have an elevation in the pancreatic enzymes, in pancreatitis, if the pancreatic duct is blocked. Otherwise, if those two sets of tests are normal, then the diagnosis can be very difficult to make and you really need a specialized test, called an ERCP (Endoscopic Retrograde Cholangiopancreatography) with pressure measurements, or manometry, to diagnose that condition.
***
Dr. Linda Austin: Is there anything characteristic about the pain? Can you just describe it a little bit more? Where in the belly is it? When does it come on? What is the relationship to food? Is it a burning pain, a stabbing pain, an ache? How do patients describe it?
Dr. Joe Romagnuolo: Well, you know, the classical description is that it is in the upper abdomen, what we call the epigastrium, just below the breast bone, or in the right upper quadrant of the abdomen where the gallbladder would be. Those pains last generally somewhere between 15 minutes to a couple of hours and will be intermittent.
They can happen every day or they may happen once or twice a year, with severe attacks, that might bring you to the emergency department. Some people have discomfort that is there in between attacks, at a low level, and other people are completely pain free between attacks. In those patients who have pain that is there all the time, it generally gets worse when they eat."
Excerpts from Podcast Transcription - Sphincter of Oddi Dysfunction: An Overview
"Dr. Linda Austin: Now, why have I never heard of this before?
"Dr. Joe Romagnuolo: Well, Sphincter of Oddi dysfunction is a difficult diagnosis to make. In some patients they will have dilation of the duct which you can see on an ultrasound, MRI or CT scan. Or, you might get an elevation of the liver test if the bile duct is obstructed because that is what drains the liver.
Or, you may have an elevation in the pancreatic enzymes, in pancreatitis, if the pancreatic duct is blocked. Otherwise, if those two sets of tests are normal, then the diagnosis can be very difficult to make and you really need a specialized test, called an ERCP (Endoscopic Retrograde Cholangiopancreatography) with pressure measurements, or manometry, to diagnose that condition.
***
Dr. Linda Austin: Is there anything characteristic about the pain? Can you just describe it a little bit more? Where in the belly is it? When does it come on? What is the relationship to food? Is it a burning pain, a stabbing pain, an ache? How do patients describe it?
Dr. Joe Romagnuolo: Well, you know, the classical description is that it is in the upper abdomen, what we call the epigastrium, just below the breast bone, or in the right upper quadrant of the abdomen where the gallbladder would be. Those pains last generally somewhere between 15 minutes to a couple of hours and will be intermittent.
They can happen every day or they may happen once or twice a year, with severe attacks, that might bring you to the emergency department. Some people have discomfort that is there in between attacks, at a low level, and other people are completely pain free between attacks. In those patients who have pain that is there all the time, it generally gets worse when they eat."
Forgot to say.... I'm a 24 year old, slender female.... Also...
Current symptoms: extreme stabbing like pain - right ribs just below breast, right ovary area and center at top of bikini line - tends to be worse at night. Nausea. General feeling like total sh*t. Weakness. Fuzzy feeling in fingers and toes occassionally. Headaches. General body discomfort. Insomnia(I assume from pain meds). In between stabbing like pains - pelvic areas seems to be very tight - sometimes burning feeling when walking. And no, I don't have a uti.... I had tons of kidney stuff go wrong a few years ago, so I know that drill with my eyes closed
Current symptoms: extreme stabbing like pain - right ribs just below breast, right ovary area and center at top of bikini line - tends to be worse at night. Nausea. General feeling like total sh*t. Weakness. Fuzzy feeling in fingers and toes occassionally. Headaches. General body discomfort. Insomnia(I assume from pain meds). In between stabbing like pains - pelvic areas seems to be very tight - sometimes burning feeling when walking. And no, I don't have a uti.... I had tons of kidney stuff go wrong a few years ago, so I know that drill with my eyes closed
Have an Answer?
You are reading content posted in the Undiagnosed Symptoms Community
Discharge often isn't normal, and could mean an infection or an STD.
In this unique and fascinating report from Missouri Medicine, world-renowned expert Dr. Raymond Moody examines what really happens when we almost die.
Think a loved one may be experiencing hearing loss? Here are five warning signs to watch for.
When it comes to your health, timing is everything
We’ve got a crash course on metabolism basics.
Learn what you can do to avoid ski injury and other common winter sports injury.
