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

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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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14 Replies

  • Posted

    I've been experiencing similar systems. I've removed grains, dairy, all sugars and gluten (autoimmune paleo diet) from my diet. It has reduced my systems by 75%.
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    • Posted

      Hi Robert, thanks for replying!  Very interesting, as that suggests some sort of autoimmune issue (which fits with the "difficult to diagnose" piece). She has considered trying gluten free, and perhaps now that mostly everything is being ruled out, it might be something to consider.  If I may ask, how long did it take before you noticed something changing?
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    • Posted

      I was feeling better within the first week. Its very important if she try's the Autoimmune paleo diet not to cheat and follow the diet strictly. I also have been struggling with pain in the right side of my abdominal area for 5 months prior to starting this diet. I been to the ER 15 times and seen 3 different GI doctors and a every test comes up negative. The only diagnosis that my GI gave me was IBS with SIBO(small intestinal bacteria overgrowth) or possible candida. I hope you wife starts feeling better.
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    • Posted

      Thanks Robert!  I will be sure to share this info with her.  I hope you continue to feel better as well!
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  • Posted

    Hello, firstly I'm sorry your wife is suffering. It is horrible and quite frankly a form of torture to be in chronic pain every day with no answers (I currently am suffering).

    My first thoughts on this were auto immune (celiac,IBD,Lupus), have any biopsies/blood tests been done for any auto immune issues? Due to her IBS has she seen a dietician, I have been advised to follow the FODMAP diet. What are her stools/bowel movements like? Can she eat anything? Or do certain things flare it up.

    Other thoughts are possible endometriosis? Fibroids, ovarian cyst (like you mentioned), PID, cervical issues (prolapse, STD,cancer). Has you wife had a full testing gynaecologically? How did she have her first child? Most of my gynaecological issues are being blamed on 2 c-sections and scar issues. I also have endo. She would need lapracopic investigation to diagnose endometriosis.

    Then I'm thinking things related to the gallbladder like bile salt malabsorption and SOD.

    Sorry if most of this has been looked into. Just trying to help smile

    I hope you manage to find out!

    Gem

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  • Posted

    My first thoughts are considering the location of the pain and the worsening if it with increased bloating throughout the day is possibly endometriosis - this condition can cause untold misery and go undiagnosed for a long time (in my case 11 years). Your wife would need a laparoscopy foe this as it cannot be diagnosed with scans.

    Alternatively the gallbladder could also be a source of the problem as a malfunctioning gallbladder can have repercussions on the whole digestive process. Many people diagnosed with IBS are later found to have gallbladder issues.

    Hope your wife finds relief soon.

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  • Posted

    Hugs to you and your wife!

    See if she has been tested for Coeliac Disease and if it's not gallbladder/gall stones, then look into more OB/GYN testing, as it could be ovarian cysts or other reproductive issue, based on the location and intensity of the pain you've described.  Those are my top three categories from what you wrote, not that I'm a doctor or medically trained in any way.

    I never hope anyone has Coeliac Disease, but in your wife's case, I almost do - it would possibly connect every single symptom and condition she's experienced, including anxiety, depression and migraines. 

    Until it's ruled out, though, she needs to keep eating gluten. Please don't eliminate anything yet - just as her gallbladder is still hanging around for the right moment, so should a varied diet until such time as you have answers.

    Good luck!

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  • Posted

    Hello Jesse,

    First of all I'm sorry your wife is experiencing all of this, it's fortunate she has your support.

    After reading through your post it sounded  familiar to what I used to experience.

    Endo and or adhesions are what come to mind. From the description of the pain etc. Adhesions can cause the burning stabbing sensation and Endo is an inflammatory condition so it too causes a great deal of pain for alot of women but it also has other symptoms depending on the location. It is however based more on a cycle. I think one thing your wife might need to have idone is a laporoscopy, I don't think you mentioned her having one. That can be helpful to determine Endo and they can also deal with adhesions if any are detected in the area. I hope this helps somewhat I didn't want to go into too much detail but please ask me anything if you'd like to and I'd be happy to answer if I can.

    all the best to you both,

    Penny

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  • Posted

    Hi All!  Thanks for the replies!  

    @aveline - I believe that they did a biopsy of the duodenom during the endoscopy and checked it for Coeliac (I want to verify that again though).  If so, it was negative, but perhaps that is not an accurate test.  One thing that I have learned in this process is that even when they test for something and rule it out, it doesn't necessarily mean it is ruled out 100%.  Which leads me to the next item...

    @penny49988, @debbie89808, @aveline - Regarding potential OB/GYN issues, I know that they have looked using scans and non-surgical, um, points of entry; however, as you have suggested, I am of the understanding that laparoscopy is the only true method of finding or ruling out endometriosis.  I know they wanted to do an ablation at one point, due to issues with excessive bleeding (she has a blood platelet disorder), but I don't think anyone has mentioned laparoscopy for this.  Now, if the surgeon decides this week that it is time to go in, I will insist that they look for these other possible issues.  Frankly, I am going to insist that it IS time to go in.  The scans are not finding anything.  If this surgeon isn't willing, then I will find (a good) one that is.  It breaks my heart to see her going through this.  She is an amazing person and I just want to get her the help that she needs.

    @penny49988 - It is interesting because we originally thought that this pain was definitely on a cycle.  That is why we first thought it was a cyst, especially how it was bad quickly and then would go away.  Her GYNO doesn't seem to think that is what is causing this (she actually got stuck on a potential musculoskeletal line of thinking), but again, the tests that have been run are not 100% reliable.  As for Endo, this is a condition that I do not know a ton about, although I am reading whatever I can to learn.  I have found it to be very effective to engage doctors (at least, the good ones) in an analytical discussion (with me being an engineer, this works for me as well), asking them to approach it diagnostically.  What is there, what can cause this level of pain, etc.  Her and I make a good team at the doctor's office.  :-)  She gives great details about what she is feeling, and I (gently) push the doctors to think through the problem.  I know that "abdominal pain" is one of the most difficult things to diagnose, but I will not give up and I will not let the doctors give up.

    Thank you all so much for your love and support for a complete stranger and his wife.  She is my best friend and the love of my life.  She's my person and I am hers.  I just want to help her however I can.

    Jesse

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    • Posted

      Endometriosis can cause severe menstrual bleeding particularly when the ovary is the site of the endometriosis. Most people think that endometriosis only causes problems on a cyclical basis. Mine became so bad that the pain was all day every day and radiated through my whole abdomen.

      Endometrial ablation will stop the heavy bleeding but will not address endometriosis affecting other organs so the pain would continue. My advice before going ahead with ablation would be a laparoscopy to check out ovaries\fallopian tubes and other abdominal structures for cysts/endometriosis.

      Best wishes

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    • Posted

      Hi Jesse I wish you both all the best and really do understand the frustration in dealing with it all. It's great though that you are a Team my husband was a tremdous help to me also. It can be draining but please do not give up on seeking an answer. Maybe your wife could keep a diary on symptoms etc. to see if there is a pattern, I did and it helped in the long run. I sincerely hope there is an answer for her (and you)soon.

      All the best to you both,

      Penny

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  • Posted

    Much of the symptoms your wife,s experiencing sound like they could be gall bladder problems, and her  tests indicate there is a problem with the gall bladder,  l had fairly typical gall bladder pain symptoms in same area,  but mine more intermittent sharp pain that lasted 1-2hrs, but l guess were not all the same, her pain also sounds like inflammation re being tender to the touch, and that can cause swelling and bloating,  but l also had  unexplained symptoms for a long time before the gall bladder pain, and for quite a long time after, that turned out to be intersticial cystitus, still they took me in to remove the gall bladder by keyhole surgery, l didnt have gallstones, but chocylitus, inflammation, l was in hospital less than 2 days, and well enough to be out for a walk within 5days, the pain indagestion and severe heartburn gone.  Seems odd if the test and gp think she,s a gall bladder problem that they dont deal with it that way, unless some of her symptoms are so untypical and they want to be sure of diagnosis of them first. l,m sure its a big help to her that your so involved in trying to understand and find a solution to her problems. Hope you get answers soon that bring her relief from her symptoms and affects. 
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    • Posted

      @lynne69494 and everyone else who was so kind to reply:

      I wanted to give an update, as I know a lot of times people forget to follow up when things get better.

      Approximately one month ago, my wife had a lap chole performed by the chief of surgery at one of our local UPMC hospitals.  He was actually the same person who had done my surgery a few years ago.  He was also the mentor of the surgeon who did not want to remove her gallbladder.  By the grace of God, we were able to get in to see him before we went on vacation in early August.  He had a cancellation and we were able to get in the same day.  He agreed pretty quickly that, given all of the test results, the gall bladder should be yanked.  We scheduled it for one week after we returned from vacation (Virginia beach, and despite the pain, we had a very nice time).  He actually used the robot, so she has only one small incision (I'm a little jealous of that).  

      We were very hesitant to say anything too quickly, but even though she still felt some of her pain after surgery, at this point, we are pleased to say that the pain has definitely subsided.  It may not be 100% gone, but she has improved DRAMATICALLY.  She no longer carries around the microwaveable heating pad, and she is not suffering on a daily basis.  I am so very thankful for the healing that has been brought to her.  

      Again, she didn't have stones, so this was probably biliary dyskinesia, and it presented atypically, with NO nausea, just lots of pain that increased throughout the day, and didn't seem to tie to any particular foods or eating habits.  Hopefully this news will help someone else some day, because atypical presentation tends to lead to missed diagnoses.  

      Thank you all again for your thoughts, kind words, and support.

      Jesse

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  • Posted

    HI its good to hear follow up where symptoms and affects on lifestyle have improved dramatically,  which again confirms you cant always accept lst or the  early responses from some experts, and if problems persist keep at them till you get improvement.   l was the same with intersticial cystitus, symptoms and affects on lifestyle misdiagnosed, undiagnosed for a long time, too long, but finally an expert who found cause and treatment that slowly but surely improved symtpoms and lifestyle 90percent, dramatically l could also say. So a good result and happy ending, nice to hear good news.  Best wishes. 
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