Not rare. But structurally missed.
ACNES is often dismissed as an odd, rare diagnosis. The numbers say otherwise: it is common, it has been described for almost a hundred years, and yet people live with it for years before anyone recognises it. That is the trap.
More common than you think
The figures vary by source, because without recognition there is no complete count either. But even the cautious estimates show this is not an exception. The figures below come from the situation in the Netherlands.
1 in 2,000
people develop ACNES each year, according to Dutch doctoral research. That is not a rarity.
~25,000
people in the Netherlands have ACNES as the cause of their chronic abdominal pain.
2 : 1
for every 2 patients with acute appendicitis, there is 1 patient in whom ACNES can be diagnosed.
What a missed diagnosis costs
A missed diagnosis is not free. Not for you, and not for the system. Research mapped the costs in the year before diagnosis (in the Netherlands).
€19,200 per patient
in largely avoidable care and productivity costs in the year before diagnosis. Think of scans, scopes, referrals and time off work: test after test that finds nothing, because the wrong thing is being examined.
"Test after test that finds nothing. Not because there is nothing, but because no one looks at the abdominal wall."
It is not in the patient, it is in the looking
ACNES falls out of view for reasons that have nothing to do with the severity of your complaint.
Unknown to doctors
The diagnosis comes about with difficulty, mainly because of unfamiliarity with this form of nerve pain, among both doctors and patients.
No conclusive test
There is no scan that proves ACNES with certainty. It requires targeted physical examination, and you have to think of it.
Organs first
With abdominal pain, the organs are examined first. Only when everything comes back negative does the abdominal wall sometimes come into view. Often far too late.
The years in between count for no one
What is visible
- Patients who eventually get the diagnosis
- Treatment results in specialised centres
- The direct care costs of tests
What stays invisible
- Everyone who does not yet have a diagnosis and keeps searching
- People who gave up and accepted the pain as "chronic and unexplained"
- The mental toll of years of not being believed
- Those who had the wrong treatment or surgery
Where these figures come from
1 in 2,000 per year and the €19,200 cost
25,000 people in the Netherlands
Ratio to appendicitis
Official guideline
🏎 Need help right now?
If there is immediate danger to yourself or someone else: call 112. Feeling low or having thoughts of suicide? In the Netherlands you can call or chat day and night with 113 Suicide Prevention via 0800-0113. Outside the Netherlands, contact your local emergency line.