Why does endometriosis diagnosis come so late?

According to the 2022 ESHRE guideline, an average of 8 to 12 years passes between the first symptoms of endometriosis and a reliable diagnosis. The delay does not have a single cause: pain being treated as normal, symptoms resembling other problems, imaging that can look normal and a definitive method that is surgical all add up.

1. Pain is treated as “normal”

According to the World Health Organization, in many countries the public and front-line health workers do not know enough that severe pelvic pain is not normal, which leads to normalisation and stigma of symptoms. People may themselves assume their pain is something “everyone goes through”.

2. Symptoms resemble other problems

Endometriosis shows up in very different ways: pain, bowel and urinary symptoms, fatigue and difficulty getting pregnant. ESHRE says the evidence for predicting it from symptoms alone is weak, which is one reason the process gets complicated.

3. Imaging can look normal

Ultrasound and MRI are recommended in diagnosis, but ESHRE stresses that a negative scan does not rule out endometriosis, particularly superficial disease. A scan with no findings can sometimes be read as “nothing is wrong”.

4. The definitive method is surgery

For many years laparoscopy was regarded as the “gold standard”. ESHRE notes that it is an invasive procedure that can carry serious, if rare, risks, and that a reliable, inexpensive approach that does not need surgery would be preferable; it says large international studies are needed for this.

5. The wait is longer for young people

According to data reported in the ESHRE guideline, the time to diagnosis can exceed 12 years when symptoms begin in adolescence. In a study of 4,334 people, those whose symptoms began in adolescence waited three times as long as those whose symptoms began in adulthood (6 years versus 2 years), and the time until diagnosis was 5.4 years versus 1.9 years. They also more often reported not being taken seriously and being told nothing was wrong. See our article on endometriosis in teenagers.

What can shorten the process?

• Note your symptoms and organise them with the checklist.
• If the answer “it’s normal” does not satisfy you, ask for a second opinion.
• If your symptoms continue even though imaging is normal, discuss next steps with your doctor.

You can find the diagnostic steps on our diagnosis page.