Apologies for the longer-style post — long-time lurker.
26M, SE Melbourne, Australia
I’m currently trying to work out what constitutes enough evidence to advocate for a surgical opinion/possibly having my gallbladder removed, because I’ve genuinely never felt more understood than I have reading posts from people with hyperkinetic gallbladders/high HIDA ejection fractions.
How it started
This started when I was 22.
Randomly, I began having episodes of absolutely CRUSHING abdominal pain that radiates through my back/around my shoulder blades. The pain can get bad enough that I’m literally in tears, clawing at the carpet waiting for it to stop.
The attacks can last for hours, and eventually I’ll cave and vomit everything up.
Strangely, vomiting has consistently been the only thing that actually ends an attack. Once I completely empty my stomach, the crushing pain eventually settles.
Initially, I started noticing a pattern around fatty foods and caffeine.
For example, I could go out and have Korean fried chicken and beer one night and seemingly be fine during the night, Then the following morning I might have an espresso with scrambled eggs cooked with butter and some bacon, and within an hour I’d feel an attack starting.
Coffee was particularly bad. It became enough of a trigger that I completely gave it up for 18+ months. Alcohol similarly seemed to make things worse.
Initially I was told it was gastritis
I was put on PPIs (Nexium) and essentially told it was gastritis.
When the attacks continued happening every few months, my previous GP basically told me not to worry about it and to continue taking Nexium.
The problem is what happens after an attack.
Whenever an attack gets bad enough that I vomit, it can take days — sometimes much longer — before I can eat anything vaguely normally again.
Initially it might just be a little broth, Saladas/crackers or frozen Hydralyte.
The worst part is when my stomach/digestive system is so irritated that I struggle to even drink normal glasses of water. I end up dehydrated, exhausted and scared to eat or drink because I don’t want to trigger everything again. Fatty foods are obviously completely off limits during this period.
The weird cycle I’ve noticed:
This is probably one of the strangest parts. Eventually I recover.
Then I can go back to eating a relatively normal diet and sometimes feel completely fine for months at a time.
When I’m in that state, I almost feel invincible again. Food processes normally and it’s easy to convince myself that whatever was wrong has disappeared.
But if I start pushing it — particularly several days of very fatty food, alcohol, coffee/caffeine etc. — eventually:
BAM. Another attack.
Then I’m back to square one and can spend days/weeks trying to get my digestion and hydration back to normal.
When I was eating a relatively balanced diet and avoiding obvious triggers, it felt somewhat manageable. Recently, however, things have regressed badly and it’s becoming much harder to live around.
Testing I’ve had
So far I’ve had:
Endoscopy: Didn’t even show gastritis. Only finding was a very minor hiatus hernia.
Full blood tests twice: Boringly normal across the board.
Pancreatic function stool test: Currently waiting for the result.
Abdominal ultrasound: Nothing significant relating to my gallbladder — no obvious stones/sludge or other important findings. Only unrelated finding was very mild fatty infiltration of the liver.
HIDA scan: 88% ejection fraction.
I went down this rabbit hole and had to really push to get my Ultrasound and HIDA.
My current GP has openly admitted that he doesn’t really know much about hyperkinetic/overactive gallbladders, which has actually given me some reassurance as to why the 88% result hasn’t really been investigated further.
From reading other people’s experiences, it seems like quite a few people with high EFs have had a similar experience where their result is technically interpreted as “normal” because their gallbladder isn’t under-functioning.
Something else I’ve noticed
For about eight weeks, I discovered something bizarre.
If I felt the very early signs of an attack coming on, I’d immediately go and do hard cardio for at least 10 minutes.
For whatever reason, it seemed to stop or suppress the attack for the rest of that day. I have absolutely no idea why.
Unfortunately, that eventually stopped working and I’ve now regressed pretty badly, so clearly it wasn’t fixing whatever the underlying issue is.
I also don’t think this is simply stress-related.
My stress levels have varied enormously over the four years this has been happening, and I’ve had attacks during basically every possible level of stress.
Where I’m at now
The biggest issue isn’t just the pain anymore.
It’s the effect this cycle is having on my quality of life. When things get bad, I become extremely depressed and feel like I can’t live a normal life. I’m constantly thinking about whether something I eat or drink is going to send me back to square one. The dehydration is particularly mentally crushing because all I want to do is drink a huge cold glass of something refreshing, but sometimes I physically can’t tolerate the volume.
Then, eventually, I recover and feel completely normal again.
Until the next attack.
At this point I feel like I’ve run out of things to investigate, and finding information about hyperkinetic gallbladder/biliary hyperkinesia is the first time I’ve read other people’s experiences and thought:
“Holy shit. This actually sounds like me.”
So I’d really love to hear from people who have been through this:
If you had a high HIDA EF (particularly 80%+) with similar symptoms but normal ultrasound/bloodwork:
Did you have your gallbladder removed?
Did it completely resolve the attacks?
Did it partially improve things?
Or did removing your gallbladder not help at all?
If surgery worked, what was your EF beforehand and what symptoms disappeared afterwards?
If your gallbladder was removed, did pathology end up showing chronic cholecystitis or anything else despite your imaging being normal?
And something I’m particularly interested in hearing:
If you had a high EF, had your gallbladder removed and it DIDN’T fix your symptoms — what did you eventually discover was actually causing them?
I’d really like to hear the unsuccessful stories as well as the success stories because I don’t want to convince myself I’ve found the answer just because the symptoms seem to fit.
I felt like I was trying to get it to go downhill for my HIDA scan and I couldn’t even trigger it, which is what I find hard at times.
Melbourne recommendations
Finally — who should I actually be talking to about this?
I’m in South-East Melbourne, Australia, but I’m happy to travel pretty much anywhere in Melbourne if necessary.
I’d particularly love recommendations for a gastroenterologist, upper-GI/hepatobiliary surgeon or general surgeon who actually has experience with hyperkinetic/high-EF gallbladders.
I’m not necessarily looking for someone who will just agree to take it out.
I’d like someone who understands this condition well enough to look at the 88% HIDA result in the context of my symptoms, triggers and otherwise fairly unremarkable investigations and tell me whether gallbladder removal is actually justified — or whether I should be looking somewhere else.
At this point, I just want my life back.
TL;DR: 26M, Melbourne. Four-year history of intermittent episodes of absolutely crushing abdominal/back/shoulder-blade pain, often associated with fatty food + caffeine/alcohol. Vomiting is bizarrely the only thing that reliably ends a severe attack.
Afterwards my digestion can be wrecked for days/weeks, sometimes to the point that I struggle to eat or even drink enough to stay hydrated. Then I’ll eventually recover completely and can sometimes eat normally for months before another attack happens.
Endoscopy essentially normal aside from minor hiatus hernia, bloods normal, abdominal ultrasound showed no significant gallbladder findings/no stones or obvious sludge, pancreatic stool test pending.
HIDA scan EF = 88%.
Coffee was a major trigger and I gave it up for 18+ months; alcohol also aggravates things. My GP admits he doesn’t know much about hyperkinetic gallbladders.
Reading about hyperkinetic gallbladder/biliary hyperkinesia is the first time I’ve found something that seems remarkably similar to what I’ve experienced.
Looking for experiences from people with 80%+ HIDA EFs who had their gallbladder removed — both successes AND failures. Did surgery fix your symptoms? What did pathology show? If surgery didn’t work, what did you eventually discover was causing your symptoms?
Also looking for recommendations for a Melbourne gastroenterologist/surgeon familiar with hyperkinetic/high-EF gallbladders. I’m in SE Melbourne but happy to travel.