Mystery Abdominal Pain - any ideas?

[hybriseris]

So about five years ago, I started experiencing horrible abdominal pain that on average came every few months. There were some times it’d come within a few weeks of each other but usually if I have an “episode”, it’s every 3-ish months. The pain is right below my chest and well above my bellybutton, centered. It feels like a constant unbearable gnawing with occasional sharp “squeezing” pains. It will start around 3pm and continue until 4am, on average. It is horrible, and there is nothing that relieves it - no med, no position I get in to, walking, laying down - nothing. If I took Zantac early enough before it was taken off the shelves it seemed to help, but pepcid/prilosec/etc have never made any difference. Tylenol, ibuprofen, Tylenol w/ codeine…didn’t touch it.

There is no specific food that seems to irritate the issue that I can pinpoint (MAYBE egg yolks, MAYBE chocolate but inconsistent), but there were several times I didn’t eat until later in the day, had a huge meal, and then that pain came on unbelievably. Most of the time tho, it seems to have no rhyme or reason.

I am wondering about my gallbladder because we have a family history of women having bum gallbladders and this started around the time I took oral birth control which can effect the gallbladder, but my GP is unconvinced. She says my symptoms aren’t classic, and if it were my GB it would happen every time I eat, not every 3 months. I typically do not experience nausea during these episodes.

This year I embarked on every test possible for my gallbladder. Had a completely normal ultrasound. Had an upper endoscopy with biopsies taken, confirmed celiac disease which is not a surprise as my Dad has it and some slight inflammation but no ulcers and was told to cut down on NSAIDs. I was completely capable of going gluten free because of knowing my dad’s diet (watch soy sauce, cold cuts, all those things you don’t think have gluten), and was optimistic that maybe that was the source of my abdominal pain. Well, three months later I had probably one of the worst attacks in a while, three nights in a row. Had to stay home from work since I’m in dentistry and no one wants a tired hygienist with sharp tools in their mouth, so now it’s costing me money on top of sleep.

I completed a HIDA scan on Friday that shows my gallbladder motility is 80% (35% or below considered abnormal) and no duct abnormalities.

I have a follow up with my GP and the gastroenterologist she sent me to. I feel very lost and upset because the best my GP could give me was “its probably stress.” That’s not a good enough answer, imo. I have had an anxiety disorder my entire life, and never had this pain and while the last year of my life has been stinkorama, this started LONG before that. If it were stress…I could accept that if it didn’t mean living in fear of that pain and how it’ll financially impact my ability to work, as there seems to be no way to stop it once it begins.

I like the gastroenterologist more and am hoping she will be more helpful and receptive, but I’m wondering if anyone has any ideas or this experience resonates with them so I have good questions for her when I see her. Right now I just feel like I’m not being taken seriously as my GP air-quoted “horrific” back to me when describing my pain and told me to take pepcid when I felt it.

[hut-ho78]

That sounds horrific. Have you tried taking 2 Benadryl, waiting 30 minutes and taking 2 more if it by ant stopped? Benadryl is also an antispasmodic so if it is diaphragm or other spasms, that may help.

Other than that keep persisting with the doctors. It always seems hard to get them to persist with hard to pin down things like abdominal pain or allergies. Friends have finally been diagnosed with the following: abdominal aortic aneurism, small bile ducts from liver to gall bladder, endometriosis, hiatal hernia, severe undiagnosed UTI that caused the urethra to swell and urine to back up into the bladder, kidney stones, ulcers, diaphragm tear, pancreatic problems including cancer, fibroids in the uterus causing it to press on other stuff, undiagnosed food intolerances and allergies. It can be a simple solution but finding the cause, as you know, can be quite a challenge.

Just keep with it and good luck. Big hug.

[CHT]

It sounds like silent reflux to me. It could be triggered by certain foods or activities - for me it was food that caused my gut to slow down too much. Antacids are a start, but a a GI doctor should be seen! Acid reflux can turn into Barets esophogus.

[Sdel]

Trigger points? I’ve got a killer one in my lower abdominal that practically crippled me when it is set off.

[hybriseris]

@CHT

Antacids are a start, but a a GI doctor should be seen

I’ve already seen one, and had an endoscopy with biopsies as noted in my OP. Was there something else they did for yours? I do have occasional reflux that isn’t silent so I’m already aware of it.

[CHT]

I wore a tube down my throat that tracked acid in my esophagus.

My ultimate fix, as recommended by my doctor, was a low FODMAP elimination diet. It helped my IBS AND my reflux. It is not an easy diet to follow, but there are some great aps to make it easier, and once symptoms go away, you can start to add back foods to find your trigger.

[blue_heron]

Do you still have your appendix? I had similar symptoms three times, 3-6 months apart. Felt nauseous but couldn’t throw anything up, floor yoga didn’t help, Tums didn’t help, only lying in bed was bearable. The discomfort scale was worse than the bones I’ve broken. My stomach felt like it was filled with air. I never had the sharp stabbing feelings that are quintessential to appendicitis, but the third time I went to urgent care and they sent me to the ER straight away. Has not happened since having my appendix removed.

[hybriseris]

Hmm, I do still have it! I’ll add this to my potentials list for my follow-up, thanks!

[Skippy12]

Consider abdominal migraine. Uncommon in adults but can occur. No specific diagnostic test for it, but can see if migraine abortive (triptan) helps as those are generally low risk to try.

[glitterless]

Have cardiac issues been ruled out?

[Fillabeana]

I’m with @Skippy12.
Abdominal migraine gives me horrific pain. I had a small bowel rupture in 2005 and I think the pain from abdominal migraine is worse than that was. Not all of the abdominal migraines are that awful, but they can be.

If I have two Tylenol and a cup of coffee IMMEDIATELY upon recognizing an oncoming abdominal migraine, it might go away. Zomig (a triptan drug) is also helpful.

I get headache migraines too but not at the same time.

[JanM]

Someone I read about had mysterious abdominal pains off and on for years, without doctors being able to find a cause. It turned out she had a chronic appendix, not an accute appendix the way people usually have.

There have been appendix cases where the appendix is in all kinds of non-standard locations.

[hybriseris]

Thanks! I did some reading and saw it occurs most commonly in children so I wasn’t sure, but with two of you experiencing it as adults…something to look in to.

@blue_heron I do still have my appendix but the pain is pretty localized and nowhere near that area of my abdomen. It’s pretty high up, right beneath my breastbone and centered. However, considering, I’m not ruling anything out!

Had a HIDA scan last week. All gallbladder ducts look fine, and ejection fraction was 80%, well above what’s considered abnormal (35% or below). Follow up is this coming Wednesday and hoping to bring some of these possibilities with me!

[dr5627]

Unfortunately no help for you but I have almost the exact same thing but haven’t seen anyone about diagnosing it yet - gnawing stomach pain with occasional squeezing/stabby-er pain during an episode, very intermittent every few months but can be more or less often. Also usually (but not always) starts after lunch especially if I eat a bigger meal after not eating for a while. Mostly though just no rhyme or reason, same as you.

It does get better for me after lying down flat out on my back and deep even breathing to relax my abdominal muscles, then I can bear the pain, but if I get up it will come back quickly. Usually goes away by the next morning.

The only thing I’ve (maybe) pinpointed is when I started eating eggs for breakfast every day last year the pain came nearly every day and when I stopped it became just intermittent again like before. That’s all I’ve got so far, I’d love to hear if you ever figure it out!

[hybriseris]

I’ll definitely keep you updated. Your experience is so eerily similar to mine, even down to eggs being the only thing I could really pinpoint and even then I’m not sure because I can usually eat them with no issues. Strange! Do you have any issues w/ acid reflux?

[dr5627]

I can eat eggs occasionally too with no problems so I’m not sure that was it either, but that was really the only thing I changed when I was getting these episodes every day.

I do have some silent reflux occasionally, not sure if it’s related though!

[snowblaze]

Did they check for any form of hernia? There are a couple kinds that might fit with your symptoms.

[blue_heron]

I never had localized pain either. All I could say was my stomach hurt and my whole abdomen felt swollen. That’s why I never realized what it was. It is most common in children, but I was in my mid-20s
(younger, but not a child child) and one of my mother’s co-workers was sent to the hospital with appendicitis at 40.

[forwardmarch]

I can’t add any specific ideas but wanted to offer empathy … what you’re describing is life altering and you deserve much better than air quotes.

It’s the right time of year to consider different health plans, if needed, to upgrade your PCP. I hope that’s an option. Try using the search term ‘diagnostician’ in your area. If might turn up a PCP with a reputation for working on confounding issues. Also consider using an internist as they focus solely on adult issues.

The last time I needed a new PCP, I was reading online reviews and stumbled across a doc with reviews mentioning his ability to manage ‘complicated’ patients with multiple issues. The reviews were correct. He’s very persistent about addressing issues. Best wishes!

[hybriseris]

@forwardmarch

Try using the search term ‘diagnostician’ in your area. If might turn up a PCP with a reputation for working on confounding issues.

I thank you very much for this suggestion since many people don’t know that’s an option! I work in healthcare and thankfully have wonderful connections and am seeing one of the best diagnosticians in the area. She just so happens to also have a terrible bedside manner which I’ve put up with because she’s been otherwise very helpful in the past. I don’t feel like she’s thrown her hands up about it, but she used to work in a hospital setting and you can tell she’s a little jaded. I like the gastroenterologist she sent me to quite a bit, so it may be about further going down the rabbithole with her.

I do have a “flex” plan that allows me to see doctors outside the state if needed, and I’m very fortunate in that respect. Even still, financially it’s not going to be an option long term which adds pressure to the situation.

Thanks for your kind words!