The diagnostic delay in endometriosis, and why it matters
Endometriosis is common, and it’s often diagnosed late. The World Health Organization says the average time to diagnosis is between 4 and 12 years. Pain that gets in the way of your life deserves to be taken seriously, and it deserves an answer.
Period pain has been brushed off for a long time, by health systems, by families and sometimes by ourselves. This post is about one condition where that matters: endometriosis.
How common, and how long it takes
The World Health Organization estimates that endometriosis affects about 10% of reproductive-age women worldwide, and says that currently the average time to diagnosis is between 4 and 12 years.1 It describes endometriosis as a chronic disease, with symptoms that include severe pain during menstruation, heavy menstrual bleeding, chronic pelvic pain, infertility, and abdominal bloating and nausea.1
Why it takes so long
The WHO explains that symptoms are variable and broad, so they can be hard to recognize, and that access to early diagnosis and effective treatment is limited in many settings.1 Endometriosis is diagnosed using imaging such as ultrasound or MRI, and surgery may be used to confirm it, though it isn’t necessarily needed before treatment starts.1 The WHO adds that new and emerging tests, including simple symptom checklists and blood tests, are being developed to identify endometriosis earlier.1
Period pain isn’t something to just live with
You shouldn’t have to wait for the system to change before asking for help. A careful history of your pain, how heavy your bleeding is, and any related symptoms can help with diagnosis, according to the WHO.1 That’s something you can start on today:
- Write down when your pain happens and how strong it is.
- Note how heavy your bleeding is, and anything that comes with it.
- Bring your notes to your family doctor, nurse practitioner or gynecologist, who can arrange an assessment and imaging.
Care is about managing symptoms
The WHO notes that treatment aims to control symptoms and limit long-term impacts.1 Many people find it helps to have more than one kind of support around them.
If you’d like a person to listen to your story, I’m happy to. I can help you organize your symptom history, think through questions for your doctor, and work alongside your care team. I can’t diagnose endometriosis, and I don’t promise any outcome.
General information, not medical advice for you. Bring questions about your own health to a visit with any clinician you trust.