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doctors can't find problem. . .
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doctors can't find problem. . .

I'm so tired of hurting and not being able to find an answer.  Last May, I began having lower, mostly middle (almost pelvic area) pain.  It is often mildly crampy (think mentrual) and sometimes radiates to the left side.  Bowel movements don't affect it greatly, although when my bowels are full I do have stronger pain.  In the beginning, the pain radiated heavily to the left side (almost flank), but now it is almost always in the central, lower, abdominal area.  The pain does not go away.  It seems to get worse throughout the day, and the only time I don't notice it is when I'm sleeping.  

I have had numerous tests.  In the beginning, I was put on hyoscamine by my primary doc. (didn't affect pain).  I also had a urinary infection in the beginning, but Cipro took care of it.  I had a simple CBC with normal results.  My blood pressure is normal.  I had a thyroid test (normal).  Later, as the pain continued, I had pelvic/abdominal CT scans (June = normal, Dec. = normal with slight amount of fluid), a pelvic ultrasound (normal), a cystoscopy (normal), a colonoscopy in Aug. (normal), and ultimately a laparoscopy in which my gynecologist found adhesions attaching my RIGHT ovary to the intestine and located my appendix tucked underneath where it was neucrotic (sp?).  All that was found was on right side, though, and removing the appendix and adhesions in no way changed or bettered the type/amount of pain.  My latest concern is a large weight gain of 15 pounds in the last 4 months.  My weight has always been consistent.

I have tried several medications, but nothing seems to help.  The latest gastro. doc. said he doesn't think I have IBS, but feels I've had the "million dollar work-up" and doesn't think there's anything left to do!  I'm at a standstill, and it is frustrating.  I'm a woman in my 30's, work out daily, and have always been a fairly , thin person.  The exception being 3 years ago when I had some intestinal issues which pointed to Celiac (my aunt and 2 cousins have it).  I was tested, but only after going gluten-free.  I live gluten-free currently.  

After everything has been said and done, the pain persists daily, 24/7 - always with me.  My questions:

(1)  What am I/doctors missing in the testing process?  Is there anything I can do that hasn't been done?
(2)  Should I be worried about cancers?  Having actually visualized the organs with the scope, wouldn't my doc. have caught Ovarian cancer, etc.?  
(3)  What can I do at this point?
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233190_tn?1278553401
To answer your questions:
1) You have indeed had a comprehensive evaluation.  The imaging studies and endoscopies would rule out many of the major diseases.  At this time, you can send the stool out for malabsorption syndromes.  Confirming a diagnosis for celiac disease can also be considered with appropriate blood tests.  If everything continues to come back negative, optimizing treatment for irritable bowel syndrome can be considered.

2) Many of the major cancers would be ruled out by the tests you have already had.

3) I would consider the aforementioned tests.  These can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_
20 Comments
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Have you seen your gyno? It could be a gyno problem.
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Shebah-
The gyno is the one who ordered/did the laparoscopy.  First, she did vaginal cultures (neg.), tried an antibiotic I can't remember to rule out uterine problem (Dox-something), and, after seeing looking at the CT and ultrasound reports, decided the only way to see if it was truly gynecologic was to take a "looksie" (see previous post). So, I hope she has ruled out the gyn. issue.  I'm truly stumped. . .
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How about tumor or hormonal imbalance??
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What kind of tumor?  Wouldn't the ct scan, or ultrasound, or laparoscopy have picked up on that?  I don't know, so please, any info./help would be great. As for hormonal imbalance, I have had my thyroid checked numerous times and it is normal.
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I dont mean thyroid hormone,I mean your sex hormone?
I know postmenopause women could have pelvic pain,but you are in your 30s.so?
I am just speculating now-could it be arthritis?
some folks have more than lactose intolerance,they cant tolerate milk protein,like when i eat too much dairy products,I feel a bulge in my lower abdomin (abdomen) and become constipated.
Do you move your bowel regularly?
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82861_tn?1333457511
Guess what?  Since you know you already had adhesions verified by lap surgery, I don't think it is unreasonable to consider that they have grown back.  All it takes is one good strong strand of scar tissue in the wrong place to wreak havoc.  I'd bet money you've got bowel adhesions.
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Good point, JayBay, but the pain started before the lap surgery, and they didn't find anything on the left side at all during that surgery.  I'm sure I've had some adhesions form since the surgery, but the pain I'm referring to is pre-laparoscopic pain, unfortunately.
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you may as well get h pylori test and have your stool tested as well.
There is a young guy who eats sushi 4 times a week and starting having pain,he thought it was appendix,but it turns out to be parasitic worm from the sushi.
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I suffered from a similar issue several years ago and my adhesions were caused by endometriosis. I had constant bloating and intermittent bloating and pain. Turns out that in addition to the endometriosis, I had numerous fibroid tumors in my uterus - some of which were "transmural" (meaning, they were neither inside nor outside of the uterus, but actually part of the uterine wall itself). (By the way: transmural tumors would NOT be readily apparent on laparascopy or U/S.)

I found that not eating large meals before lying down - for a nap or for the night - helped cut down on the pain. Also, when the pain begins, I quickly pop a couple of extra-strength Phazyme capsules to help eliminate gas (no pun intended). Preventing gas build-up in the colon seems to avert any trouble - most of the time. Sometimes, nothing works, and I have had to resort to Vicodin (thanks to a VERY understanding GP). This narcotic causes my colon to relax and it, along with the Phazyme, help to mitigate the pain, even if they don't stop it entirely.
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Hmmmm. . .so how did you find out about the tumors?  I think the most frustrating element to all of this is not knowing what to do once you've done everything (so it seems).  Do you just start over?  I'm not looking for a doc who'll tell me what I want to hear, I'm just looking for a doc who'll accompany me on the journey to finding what's wrong!  They all just want to pass me on to the next specialist (Internist to ob/gyn, to gastro, to urologist, and back again!).  Thanks for all your input!
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i have been having abdominal pain for quite a while now. I have been to my doctor and she ordered an ultrasound. Didn't really find anything major, just 1 cyst on each ovary.
Yesterday i went to the doctor again 'cuz the pain was pretty bad, i asked her to please do more tests and to refer me to a GI doctor.
I went to the ER last night 'cuz i couldn't take it anymore. They did a CT scan and everything was normal,that i had lots of gas, the doctor came back and told me that i had low potassium and bacteria in my urine, possibly an UTI, although i don't have any symptoms of an UTI.... He gave me potassium pills, Cyprodex and vicodin for the abdominal pain and referred me to a GI doctor. I know it's gotta be something more than what they have found already.
I'm frustrated and can't take the daily pain i go through.
I don't want to take pain meds either, i want to find out what is causing all this not just to cover it up by taking pills.
Any ideas on what i may have? Suggestions? Also, i have IBS..
My husband thinks it's "stress" and that i should go see a counselor or something.
Help!

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maybe you have already through of this but what is your family history of disease?  do you have any relatives who have had ovarian  issues/cancer or uterine issues?  perhaps you could have a blood test to check for protein in blood for ovarian cancer. You can have a uterine biopsy too - they I believe take a sample of tissue from that area.   the tests you have had do not cover the things I have just described.
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I just thought of something else - I was looking in another forum and it prompted thought.  What if this is an STD that has just gone untreated and is creating these symptoms?  Maybe you get tested for STD's like chlamydia, trichonomas, others I am not thinking of.

I have somethign doctors can't figure out - yet - so I understand how frustrating this is.

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Joanie-
Had STD tests early in my quest for answers (back in June!).  Knew they would be neg., but did it anyway to satisfy doc.  Also, I've had laparoscopic surgery where the doc. specifically looked at ovaries and said they looked great (except for the scar tissue that had attached from my appendix to the intestine.  Also had ct and ultrasound of ovaries.  They appear very normal, and I don't think I need that blood test - I've heard it is very, very erratic in its results. Thanks for the advice, though.
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well you know your stuff and it sounds like you've been tested for everything - how frustrating - hmmmmmmmm.  well i don't know then - endometriosis???
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Yeah, my gyn. says our last resort might be to try Depo-Lupron (which will put me into premature menopause) to test for hidden endo. When she did the laporoscopic surgery she said she saw no visible signs of endometriosis.  So. . .I don't think I'm "there" yet.  I'm still going to look for other answers.  I don't think endo. causes constant 24/7 pain, every single day of the month.  Thanks, Joanie.  Helps to talk it through with someone.  Oh, my doctor friend says I still might benefit from an Uppper GI with small bowel follow-through since that is one of the few tests I haven't had!
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Best of luck to you - it seems like you will find the answer - you're doing all the right things.
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Okay I read your post again.  Could this be an issue with your spine / lower back that is radiating to your pelvic region???  Do you sit at a desk all day, do strenuous exercise?
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You are good, girl!  I've soooo often thought the same thing!  I did have an MRI of lower back, but it only showeda "Schmorl's node. . .at the superior endplate of L4."  Report says that nothing of consequence is really noted.  So, I'm not sure what to make of it.

I don't have a desk job, but I do run 3-4 miles a day.  It doesn't seem to affect me more after a run, though.  

What kind of doc would I go to for this situation if, indeed, radiating pain from the back is the answer?

Thanks for substantiating what I think might be an issue!
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For four years I've been in so much pain, and put on tramadol (now addicted, and haha, doctor now doesn't want me on it after I'm addicted by him prescribing it). Anyway, I just found out I was misdiagnosed as I went to a gastroenologist (sp??), I don't have IBS as I've been told, I have diverculitis. They said my dr should have picked that right up with my LEFT sided pain, constant pain, only on the left side, and that when I would get sick and he'd put me on antibiotics and steroids it would stop the pain but come back once the meds were done. I am so upset right now, I was told to take more fiber and tramadol, and that it was ibs, no it was not, and I've endured GREAT pain for nothing and now am addicted to the pain meds he pushed off on me to get me out of his office, thank goodness the specialist is weaning me off of them and starting a new Diverculitis treatment.
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