Mystery stomach/pelvic pain/no energy yet tests are negative. Now what?
April 12, 2011 7:35 AM Subscribe
Doctor doctor, gimmie the news. What is wrong with me (YNMD)?
In Oct 2007, I had severe middle stomach pains and right back shoulder blade pain. Very much sounding like gallstones. Took an ultrasound--negative for stones or anything else.
Feb 2011, severe low back pain where I couldn't sit, move, stand, etc. Just horrible pain like arthritis or something. Told my GYN while I was getting my annual pap and mentioned to her the fear about ovarian cancer (I'm adopted so there's a lot of fear). The only reason why I mentioned it was lack of family history, I have known endo/ovarian cysts/fibroid, which does call chronic middle pelvic/left pelvic pain, so to me it would be easily missed. Pap negative for cancer. Sent along my merry way. Period however was only 2 days compared to 5 (I'm on Loestrin). Getting hot flashes so thought maybe menopause is starting slowly.
The entire month of March severe middle, upper stomach pains, nausea, vomiting/wretching, can't eat, lost a lot of weight, burping. Went to the ER twice in 6 days, second time due to severe stabbing lower back pain where everytime I breathed in, it was stabbing pain.
ER docs, residents, my doc suspected ulcers/GERD. Did an upper GI endoscopy--negative exept for small hiatal hernia. Did stomach/pelvic CT scan (contrast and no contrast) and that was clear minus some small fluid collecting behind my cervix and they thought it was due to the pap (but a month later?). Period started last week and immediately got lower left pain near ovary, blew it off as ovarian cyst. Yet cyst did not show up on CT scan.
Finally had gallbladder ultrasound--completely clear.
Only bizarro thing--CT and ultrasound said appendix isn't visible.
So--what the heck is wrong with me? Where do I go next? I'm seeing a GI specialist in 2 days with test results to ask if possibly hernia causing pain. Doctor friend said many people in 40s suddenly have gluetin sensitivity/allergy.
Any thoughts? I honestly don't even know what tests I can take beyond the HIDA scan since I've taken 2 major tests and 1 simple test (ultrasound). Not sure if I should blow off pelvic pain to usual cysts, endometrosis, fibroid. Not sure if PID would show up on a CT.
I'm also with no energy, tired, and two weeks of a sore throat/patches on tonsils but I know the throat thing has nothing to do with the severe pain.
As soon as I finished my GI endoscope--severe pain was gone. Ate a bean/rice burrito--little bit came back but nothing ER rushing.
So WTF is wrong or where do I turn to/talk with doctors about anymore?
In Oct 2007, I had severe middle stomach pains and right back shoulder blade pain. Very much sounding like gallstones. Took an ultrasound--negative for stones or anything else.
Feb 2011, severe low back pain where I couldn't sit, move, stand, etc. Just horrible pain like arthritis or something. Told my GYN while I was getting my annual pap and mentioned to her the fear about ovarian cancer (I'm adopted so there's a lot of fear). The only reason why I mentioned it was lack of family history, I have known endo/ovarian cysts/fibroid, which does call chronic middle pelvic/left pelvic pain, so to me it would be easily missed. Pap negative for cancer. Sent along my merry way. Period however was only 2 days compared to 5 (I'm on Loestrin). Getting hot flashes so thought maybe menopause is starting slowly.
The entire month of March severe middle, upper stomach pains, nausea, vomiting/wretching, can't eat, lost a lot of weight, burping. Went to the ER twice in 6 days, second time due to severe stabbing lower back pain where everytime I breathed in, it was stabbing pain.
ER docs, residents, my doc suspected ulcers/GERD. Did an upper GI endoscopy--negative exept for small hiatal hernia. Did stomach/pelvic CT scan (contrast and no contrast) and that was clear minus some small fluid collecting behind my cervix and they thought it was due to the pap (but a month later?). Period started last week and immediately got lower left pain near ovary, blew it off as ovarian cyst. Yet cyst did not show up on CT scan.
Finally had gallbladder ultrasound--completely clear.
Only bizarro thing--CT and ultrasound said appendix isn't visible.
So--what the heck is wrong with me? Where do I go next? I'm seeing a GI specialist in 2 days with test results to ask if possibly hernia causing pain. Doctor friend said many people in 40s suddenly have gluetin sensitivity/allergy.
Any thoughts? I honestly don't even know what tests I can take beyond the HIDA scan since I've taken 2 major tests and 1 simple test (ultrasound). Not sure if I should blow off pelvic pain to usual cysts, endometrosis, fibroid. Not sure if PID would show up on a CT.
I'm also with no energy, tired, and two weeks of a sore throat/patches on tonsils but I know the throat thing has nothing to do with the severe pain.
As soon as I finished my GI endoscope--severe pain was gone. Ate a bean/rice burrito--little bit came back but nothing ER rushing.
So WTF is wrong or where do I turn to/talk with doctors about anymore?
What are your eating habits in regards to how long you go between meals and how big each meal is? Could you be periodically over-producing digestive juice?
How did you deliver your child? Could things be out of place somewhere due to delivery? Would there be some wierd scar tissue casuing pain?
Can you get a full blood test? ARe you having any issues with urinating, passing gas, or defecating that are associated with this or does it seem to be from the belly up?
posted by WeekendJen at 8:34 AM on April 12, 2011
How did you deliver your child? Could things be out of place somewhere due to delivery? Would there be some wierd scar tissue casuing pain?
Can you get a full blood test? ARe you having any issues with urinating, passing gas, or defecating that are associated with this or does it seem to be from the belly up?
posted by WeekendJen at 8:34 AM on April 12, 2011
Response by poster: Eating habits--just cannot eat at all. When I was in my episodes of full nausea/pain/wreching the only thing I could eat was like bread and cheese, hummus, cheerios and even then I would get sick. Sometimes just drinking a glass of milk was my dinner and that too got me sick. But when I feel good, it's like two bites of whatever then I just can't eat anymore. Fruit I'm good with.
Child--vaginal. I had some pelvic muscle issues I went for therapy for but that was a "I can't sit down pain" that has completely resolved since last year's therapy. I've had this center pelvic/left pain for years. Most of the time they say endo, fibroid, and or ovarian cyst. I just find it weird the CT did not show a cyst. Just some cervical fluid they're blowing off from the pap. But seriously, showing up a month after a pap?
Gas, poop, etc.--all good/normal. The pain that took me to the ER for a month was strictly upper middle. Think diaphram, stomach, gallbladder. I swore they were going to find stones or an infection. They said zero to be found.
posted by stormpooper at 8:45 AM on April 12, 2011
Child--vaginal. I had some pelvic muscle issues I went for therapy for but that was a "I can't sit down pain" that has completely resolved since last year's therapy. I've had this center pelvic/left pain for years. Most of the time they say endo, fibroid, and or ovarian cyst. I just find it weird the CT did not show a cyst. Just some cervical fluid they're blowing off from the pap. But seriously, showing up a month after a pap?
Gas, poop, etc.--all good/normal. The pain that took me to the ER for a month was strictly upper middle. Think diaphram, stomach, gallbladder. I swore they were going to find stones or an infection. They said zero to be found.
posted by stormpooper at 8:45 AM on April 12, 2011
Response by poster: Oh and I've never had an official pelvic laproscopy. All endo/cysts/fibroids showed up on ultrasound, HSG, feeling it, symptoms. I didn't want to go messing around before getting pregnant. Now that I have a child, I'm a little more willing although I would like a 2nd child. But lately, the way I feel, esp. zero energy, I don't even know if I can take care of a 2nd child. I just want to sleep all the time.
posted by stormpooper at 8:46 AM on April 12, 2011
posted by stormpooper at 8:46 AM on April 12, 2011
Response by poster: Sorry one more thing. Blood workup in ER--liver, pancreas, CBC said all is fine. Any prior full blood work up including thyroid--all is fine.
WHY am I so friggen tired 24/7. I go to bed at 9 dying because I just can't stay up.
posted by stormpooper at 8:47 AM on April 12, 2011
WHY am I so friggen tired 24/7. I go to bed at 9 dying because I just can't stay up.
posted by stormpooper at 8:47 AM on April 12, 2011
I had similar symptoms (as far as eating being totally not what I wanted to do and tired all the time with DIAPHAGM area pain (which was the exact way I described it to my doctor at the time)) when I had a massive festering virus for a while. I don't know if theres a test for Epstein Barr (Mono) but if there is I would try that. The only thing that really helps me is forcing myself to eat regularly (I'm the 26 year old with the stash of Ensure in my office, just in case) and really pacing myself throught the days, weeks, months to not get so tired. Ironically, the more I allow myself to lay in bed, the more tired I get, so doing stuff (going for a walk, actually cooking dinner, something to get the brain going a bit) helps in moderation and again comes down to forcing myself to do it. If you have insurance, it might be worth your time to bring a comprehensive list of your symptoms and concerns to someone who specialies in auto-immune disease (basically when the body attacks itself) to rule out things like lupus.
The eating is the worst part because for me it's liek a black hole where the moment I dont eat on time, i get stomach pains and convulsions (like teh kind when you stomach is trying to make you throw up) which makes eating not so appealing, but if I dont force myself to eat (crakers, at least) teh pain gets worse. I've also done the milk for dinner thing and sometimes throw that up and the milk is all sort of slodidified or curdled or something (sorry to be graphic). I feel best when I'm almost constantly eating, as in nibling a cracker and sipping on seltzer every 10 mins or so. Empty stomach seems to be a real problem. I have a pretty high pain tolerance in other areas so I don't think I'm being a first world never been hungry wuss.
From my personal experience, the search for a concrete answer will be pretty long and possibly infinite. Try to take care of yourself as much as possible in all those hollistic ways in the meantime. I feel your pain.
posted by WeekendJen at 9:29 AM on April 12, 2011 [1 favorite]
The eating is the worst part because for me it's liek a black hole where the moment I dont eat on time, i get stomach pains and convulsions (like teh kind when you stomach is trying to make you throw up) which makes eating not so appealing, but if I dont force myself to eat (crakers, at least) teh pain gets worse. I've also done the milk for dinner thing and sometimes throw that up and the milk is all sort of slodidified or curdled or something (sorry to be graphic). I feel best when I'm almost constantly eating, as in nibling a cracker and sipping on seltzer every 10 mins or so. Empty stomach seems to be a real problem. I have a pretty high pain tolerance in other areas so I don't think I'm being a first world never been hungry wuss.
From my personal experience, the search for a concrete answer will be pretty long and possibly infinite. Try to take care of yourself as much as possible in all those hollistic ways in the meantime. I feel your pain.
posted by WeekendJen at 9:29 AM on April 12, 2011 [1 favorite]
Also, stress seems to make things a bajillion times worse, so if stress or anxiety is an issue for you, address that as well.
posted by WeekendJen at 9:33 AM on April 12, 2011
posted by WeekendJen at 9:33 AM on April 12, 2011
sorry, I don't know much about drugs, so if the Prozac already does that, cool.
posted by WeekendJen at 9:34 AM on April 12, 2011
posted by WeekendJen at 9:34 AM on April 12, 2011
I would get tested for sleep apnea...your doc can probably give you a referral, but the extreme tiredness can cause stress which in turn can cause a lot of the other issues you are talking about.
posted by Shark Tail at 10:37 AM on April 12, 2011
posted by Shark Tail at 10:37 AM on April 12, 2011
IANAD etc, but the symptoms you describe do sound like GERD, and the hiatal hernia could be contributing to esophageal reflux pain. I don't know how long one has to have bouts of acid reflux before you have changes that would be visible on esophageal endoscopy. From my crude understanding, it's possible to be in great pain from acid reflux without there being enough damage to the esophagus to be visible. One way to test this hypothesis is by taking an antacid when you feel this pain, and seeing if it helps.
The other thing to consider is that emotional stress can leave us highly sensitized to pain. It's a physiological thing that might be affecting your symptoms. If you've been under a lot of stress, things that might not bother you otherwise can be quite painful.
When you were at the ED, did they check out your heart, give you an EKG and do an enzyme panel? While I don't necessarily think this is the problem in your case, heart problems can occasionally present as abdominal pain, nausea and belching, especially in women. It's worth checking out, just to be on the safe side.
posted by ladypants at 1:26 PM on April 12, 2011
The other thing to consider is that emotional stress can leave us highly sensitized to pain. It's a physiological thing that might be affecting your symptoms. If you've been under a lot of stress, things that might not bother you otherwise can be quite painful.
When you were at the ED, did they check out your heart, give you an EKG and do an enzyme panel? While I don't necessarily think this is the problem in your case, heart problems can occasionally present as abdominal pain, nausea and belching, especially in women. It's worth checking out, just to be on the safe side.
posted by ladypants at 1:26 PM on April 12, 2011
Response by poster: @ladypants. Yes the 2nd ER visit gave me a EKG because I was faint, dizzy, blood rushing to my arms/hands, disoriented (really good time). :\
This happened after the super bad stabbing pain I had in the back. No one knows what that was.
I was on Nexium for about a week until my endoscope and it did help somewhat. PCP said get off of it since test didn't show anything. Asking GI specialist their opinion. Don't feel like being on it long term.
posted by stormpooper at 1:55 PM on April 12, 2011
This happened after the super bad stabbing pain I had in the back. No one knows what that was.
I was on Nexium for about a week until my endoscope and it did help somewhat. PCP said get off of it since test didn't show anything. Asking GI specialist their opinion. Don't feel like being on it long term.
posted by stormpooper at 1:55 PM on April 12, 2011
Anecdotally, I once had terrible stabbing right shoulder pain that was so bad that I couldn't move for several minutes. It was absolutely terrifying.
At the time, I had been on a raw food diet, eating only nuts, twigs and gerbil food. I was visiting a friend in LA, and she offered me some of her french fries, which were AMAZING! I ate a bunch of them - oh man, so good. BOOM! Pain. Like there was a knife jabbed just below my right scapula. Could not move.
I called a family member (my mom) who is a physician to ask them what to do if I am suddenly paralysed. They asked me what I'd been doing at the time - I mentioned the fries, and they deduced that I had a gallbladder spasm. I guess my poor gallbladder wasn't used to encountering fats and just went apeshit. It took several minutes before I could move - and then several hours before the pain finally subsided.
So, yeah, I think gallbladders can be mofos even without the presence of stones. And acid reflux can hurt even if there's nothing to look at. I've met several patients who've sworn up and down that omeprazole was the only thing that helped their chest/abdominal pain, or alternatively, cursed the hospital staff for taking it away. Nexium is pretty similar - it's also a proton pump inhibitor. Alternatively, you could take an over the counter antacid like TUMS when you experience the pain - and if it helps, you've pretty much established that the cause was acid reflux.
posted by ladypants at 3:14 PM on April 12, 2011
At the time, I had been on a raw food diet, eating only nuts, twigs and gerbil food. I was visiting a friend in LA, and she offered me some of her french fries, which were AMAZING! I ate a bunch of them - oh man, so good. BOOM! Pain. Like there was a knife jabbed just below my right scapula. Could not move.
I called a family member (my mom) who is a physician to ask them what to do if I am suddenly paralysed. They asked me what I'd been doing at the time - I mentioned the fries, and they deduced that I had a gallbladder spasm. I guess my poor gallbladder wasn't used to encountering fats and just went apeshit. It took several minutes before I could move - and then several hours before the pain finally subsided.
So, yeah, I think gallbladders can be mofos even without the presence of stones. And acid reflux can hurt even if there's nothing to look at. I've met several patients who've sworn up and down that omeprazole was the only thing that helped their chest/abdominal pain, or alternatively, cursed the hospital staff for taking it away. Nexium is pretty similar - it's also a proton pump inhibitor. Alternatively, you could take an over the counter antacid like TUMS when you experience the pain - and if it helps, you've pretty much established that the cause was acid reflux.
posted by ladypants at 3:14 PM on April 12, 2011
.. well, established that the cause was most likely acid reflux.
posted by ladypants at 3:15 PM on April 12, 2011
posted by ladypants at 3:15 PM on April 12, 2011
Response by poster: Tums made me sicker. Er said dont take them.
posted by stormpooper at 3:50 PM on April 12, 2011
posted by stormpooper at 3:50 PM on April 12, 2011
Response by poster: Update: Finally got somewhere.
1. Severe GERD. On a 8 week regimen.
2. Testing for celiac disease.
posted by stormpooper at 6:29 AM on April 15, 2011
1. Severe GERD. On a 8 week regimen.
2. Testing for celiac disease.
posted by stormpooper at 6:29 AM on April 15, 2011
Thanks for the update. I hope the medication is offering you some relief.
posted by ladypants at 2:13 PM on April 15, 2011
posted by ladypants at 2:13 PM on April 15, 2011
Response by poster: Thanks Ladypants.
Blood test came up negative. So they're going the GERD route.
So odd that I was emergency-room sick for a month and now it's gone.
The only remaining symptom is I have zero appetite really. Unless it's like a tapas-type meal (hummus, cheese and bread, cereal), I have no appetite for steak, chicken, etc. meat-based or big meals. Even manacotti (cheese base) I could only eat half of one.
Oh well. I guess enjoy the weight loss and move on.
posted by stormpooper at 11:44 AM on April 21, 2011
Blood test came up negative. So they're going the GERD route.
So odd that I was emergency-room sick for a month and now it's gone.
The only remaining symptom is I have zero appetite really. Unless it's like a tapas-type meal (hummus, cheese and bread, cereal), I have no appetite for steak, chicken, etc. meat-based or big meals. Even manacotti (cheese base) I could only eat half of one.
Oh well. I guess enjoy the weight loss and move on.
posted by stormpooper at 11:44 AM on April 21, 2011
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posted by stormpooper at 7:39 AM on April 12, 2011