Wife having daily severe abdominal pain, many doctors, many tests, no cause determined. Please help

All - I am new to the group, and frankly, I am quite desperate.  I am writing because my newlywed wife is suffering daily and we cannot find any answers leading to a fix.  I am sorry if this ends up being a long post, but much has been tried and many doctors have been seen.  I thank you in advance for reading our story.  I am just trying to find a cause for my wife’s abdominal pain.

I will try to keep this organized.  First, a little about my wife.  She is 38 years old.  She has one child (now an adult).  She has had IBS in the past, however, it has never manifested itself like this.  She has anxiety and depression.  This is well-treated, and actually, despite the pain, she is happier now than she has ever been.  She also suffers from migraines, although these are also being well-treated currently with nortriptyline.  She also has SVT, again, well-treated with a low-dose beta blocker.

I will now describe the pain as it exists today.  Every day, my wife wakes up and has mild to sometimes moderate pain in the lower-right abdomen.  Typically, she would describe the pain as anywhere from dull to burning to stabbing.  In the morning, she would generally call this pain level a “4” or “5” (out of 10).  As they day goes on, by mid-afternoon, the pain has increased.  Some days it only reaches a 6, but others, by late afternoon, it has reached an 8.  At this point, she finds it difficult to walk, drive, etc.  On a few occasions, it hits a 9 and we have ended up at the hospital.  We have not done this in the past two months, however, as they tend to treat and street.  She does not want to take pain meds any more than necessary, and that is always their approach.  When it reaches that point now, she has a small prescription of Oxy (one for plain oxy and one for percocet actually).  Again, she has relied on this very sparingly, as she does not want any of the issues associated with pain meds.  She is often able to relieve the pain with a warm compress (microwaveable heating pad) or sometimes a warm bath.  She typically keeps the compress on her abdomen, just below the rib cage, all day, reheating as needed.  I am not sure if it is the heat or the pressure, but it seems to help.  Again, this happens every day, with the pain starting out as mild to moderate, and increasing throughout the day.  She will sometimes indicate that the pain is stretching across the abdomen (from right to left) with a burning sensation.  She complains at times that she is sensitive to the touch in that area.  Also, when the pain increases, she has been getting very bloated (like it almost looks like she’s 5 months pregnant).  There has been no nausea whatsoever.

A bit of history…  We first remember the pain starting several months ago, but at the time, she would just get a stabbing pain that would pass after a few minutes, and then later a few hours.  She actually thought this may be an ovarian cyst rupturing.  This was never confirmed nor denied, but it had showed up about once a month for a few months.  Later, this pain seemed to morph into what she is feeling now.  She also thought she may have passed a kidney stone at some point, but again, never really confirmed.

So, what have we done?  Well, what haven’t we done is more like it.  She has had the following tests:

Abdominal CT with and without contrast (and another without contrast in the ER)

Transvaginal Ultrasound

Abdominal Ultrasound, including Kidneys

Endoscopy

Colonoscopy

Small Bowel Followthrough

HIDA Scan (result was 21% ejection fraction)

XRAY (Spine/Thoracic)

Multiple Urinalysis, Urine cultures

Too much bloodwork to list

(also, getting a cystoscopy this week, but so far, nothing indicating kidney stones)

As for the results, basically, all tests are negative/normal.  The only thing that jumped out was the HIDA scan, possibly indicating a poorly functioning gallbladder (mine was 22% and they took it out).  Also, the most recent CT indicated an incidental 8 mm right lobe measuring slightly higher than fluid density and has partially ill-defined borders (and a second small hypo density).  The radiologist concluded that this was statistically likely to be something benign such as a cyst.  The PCP was not too concerned about this either.

Now, who have we seen?

PCP

Gastro

General Surgeon

Rheumatologist

Urologist

OB/GYN

Cardio

Neuro (headache specialists)

Some of these have been multiple visits.  The latest was the GP, and next up is a return to the surgeon.  We originally saw the surgeon following the HIDA scan results, thinking that they would want to remove the gallbladder.  He very methodically explained why he was not ready to do that, concerned that a number of things had not yet been checked (this was before some of the tests) and that he could ultimately make things worse.  He also felt that the way the pain presented was atypical for gallbladder diseases.  At the time, much of this made good sense and we appreciated his approach.  Now, a couple of months later, the GP (a new GP actually, who I have had good experience with in the past) looked at it the way that I asked him too.  I said, ok, regardless of the symptoms that do not make sense, let’s get back to diagnostician basics.  What is in the area, anatomically speaking, that could cause this type of pain.  I asked about chronic appendicitis, which I know is considered to be very rare and is never diagnosed any more (even though it probably does exist).  He didn’t just automatically rule this out.  He examined her thoroughly, and since she was having quite a bit of pain that day, he was able to hone in on where the pain was the most severe.  He believes that this is gallbladder and is sending us back to the surgeon (this Thursday).  

As I sit here with my wife, who really had the pain ramp up right after dinner tonight (this has happened many times without eating as well, and she has been sticking to a low-fat, bland diet), I am just at the end of my rope.  She needs help.  She isn’t making it up.  She isn’t seeking pain meds.  She is suffering and I do not know how to help her.  Please, if you have ever heard of anything like this (and maybe it really is gallbladder, I hope so at this point), please share your story.  I need to find some answers for her.

Thank you for taking the time to read this.

Jesse

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