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Permanent abdominal distention without gas - doctors stumped
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Permanent abdominal distention without gas - doctors stumped

I'm a 38 year old female with no history of significant health problems beyond migraines. I am not overweight.  I am extremely frustrated by my recent medical problems, which remain undiagnosed.

About 5 months ago I began having intermittent abdominal distention, with and without gas, pelvic pain, and frequent urination (no pain).  I had 2 normal pelvic ultrasounds. I was told the intermittent distention (assumed to be bloating) was likely menstrual related, particularly since I had just gone off the pill (although symptoms started before then).  Initially I was diagnosed with a UTI which was treated and resolved immediately, with no allevation of existing symptoms - and strangely without painful urination.   I have had no fever, no sign of infection in testing, no vomiting or diarrhea

Just over a month ago, the following began occurring:

--Permanent abdominal distention, decreased after sleeping (but never completely gone), increased as soon as I wake up and move around, and especially increased after eating/drinking (no matter what I consume, including water) - this sometimes occurs with gas, but most often not
--Major back pain (especially lower back) with distention, esp after eating - sometimes felt into right shoulder
--Episodes of intracranial pressure that appeared to be accompanied by a rise in blood pressure (although not to abnormal levels since I have low BP to begin with) -- a couple such episodes after eating, accompanied by flushing, and a radiated burning sensation starting in my abdomen and spreading throughout my body - esp lower back, as well as full body trembling)
--Intracranial pressure has since become daily for several hours a day (NOT a headache - feels like my head is being sucked in, pressure on sinuses, teeth and ears)
--Occasional bubbles under rib cage into throat after eating that feel like I need to burp but doesn't happen
--Constipation with loose stools (not diarrhea) that seem like insufficient evacuation (GI has since prescribed Align and Xifaxin - normal BMs have returned for 2 days now - all other symptoms remain the same)

When these permanent and more serious symptoms occurred, an abdominal CT scan was ordered that showed a mass in my bladder.  Immediate referral to a urologist led to surgery to remove the mass, which was found to be a benign leiomyoma (rare for the bladder).  Urologist maintained that it may explain the frequent urination, but not any of my other symptoms.  This is confirmed given that all symptoms have continued post-surgery.

I continue on my quest to determine what is wrong with me as the symptoms seem to get worse - especially the intracranial pressure which now occurs several hours a day - not to mention the extreme difficulty eating and back pain.  I generally feel very weak.  GI mentioned possible IBS, but that doesn't make sense to me given that I do not have characteristic BM issues, distention is permanent and usually without gas, and I have other symptoms including major intracranial pressure (especially late afternoon into evening).

I have changed primary care physicians - the new internist is stumped, but working on figuring out next steps.  I've had all of the following tests which show nothing:

--Full body CT scan (recent CT showed "enlarged liver, mild pericholecystic fluid, possible acute cholysystitis or liver disease" but doctors reviewing said that is likely due to inflammation post-bladder surgery, so they were not concerned -- and this also did not show on my abdominal CT the prior week)
--Significant bloodwork
--24-hour urine collection to rule out carcinoid syndrome
--Chest and abdominal xrays
--Abdominal ultrasound to check gallbladder
--Cardiac testing including an EKG and other bloodwork
--Neurological testing including an EEG

My surgery recovery is temporarily preventing more significant testing such as endoscopy or colonoscopy, which may be ordered.   But that does not mean that is the "right direction" in terms of testing nor that those tests will definitely be ordered.  

I am hoping there are physicians and/or patients that have seen/experienced this and can give direction.  

Thank you!
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