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How to find
a hidden disease?

In Europe, it takes on average 7-10 years from the start of symptoms to the diagnosis of Endometriosis. A shockingly long time. Currently, there is no reliable, non-invasive way to diagnose this disease - so surgery, often laparoscopy, is still the only way to clarity. Read on to learn about research on symptoms, diagnosis, and what to expect from surgery.

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What are typical symptoms?

Endometriosis is often portrayed as "bad period cramps". While this is true for many patients, Endo is a full-body disease. Symptoms can affect many organs and areas of one's health:

  • abdominal pain and cramps before and during menstruation, as well as during ovulation - or non-cyclical

  • pain in the lower back, hip or legs

  • pain during or after consensual intercourse

  • bladder problems

  • digestion problems

  • irregular or long periods

  • strong menstrual bleeding or frequent spotting

  • fatigue; migraines or heart racing

  • mental health challenges, like anxieties or depressions

When do symptoms start?

The average patient is around 30 years old when diagnosed with Endometriosis. However, symptoms have often started decades before: Endometriosis can start as early as the first menstruation (menarche).

  • the average age for the first period is currently around 12-13 years, but some get their periods even under the age of 10

  • about 2/3 of all patients experience symptoms before the age of 20, but there are cases where symptom first show much later

  • Endo often ends after Menopause, when estrogen and progesterone levels are reduced

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Who is most affected?

We still do not understand what causes Endometriosis in the first place. This makes it hard to understand who suffers from it and who doesn't. So far, we are aware of certain correlations:

  • Twin studies have shown that Endometriosis is 50% inheritable.

  • Young womxn with first-degree relatives with Endometriosis have a 3-15 higher risk of getting Endometriosis themselves.

  • pregnancies and breastfeeding seem to lower the risk of Endometriosis

What can it be confused for?

Since symptoms are relatively unspecific, many patients and doctors first suspect other conditions before considering Endometriosis:

  • digestive problems, like Irritable bowel syndrome (IBS)

  • gynaecological indications, like cysts, myomas or PMS

  • urological indications, like urinary tract infections (UTI) or urinary stones

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Image by Alicia Mary Smith
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Image by Pawel Czerwinski

What does my diagnosis mean?

Finally a diagnosis! However, your hospital report opens new question: What do the abbreviations and medical terms actually mean? We explain the two most common classifications for Endometriosis.

Behind the scenes of a laparoscopy

We talked to an expert about what to expect from surgery.

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