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Endometriosis: why diagnosis takes so long

Severe period pain is seen as normal by many people, including in doctors' surgeries. With endometriosis, that is exactly why diagnosis often takes years. We have put together what is known and what changed in the 2025 guideline.

Updated: September 2026

Also in: Deutsch · Español

What endometriosis is

In endometriosis, tissue similar to the lining of the womb grows outside the womb, where it causes inflammation and scarring. The WHO estimates that about 10% of women of reproductive age are affected, around 190 million worldwide. There is currently no cure, but the symptoms can be treated.

Typical symptoms

The WHO lists above all:

  • severe pain during periods
  • heavy menstrual bleeding
  • pelvic pain that doesn't go away outside your period
  • pain during sex, bowel movements or urination
  • difficulty getting pregnant
  • bloating and nausea

Not everyone affected has all of these. Mental health often suffers too, for example through depression or anxiety.

Why it takes so long

According to the WHO, diagnosis takes 4 to 12 years on average. A 2025 systematic review found times between a few months and 12 years in studies since 2018. Its conclusion: the delay arises mainly on the doctors' side.

⚠️ Period pain that regularly keeps you from school, work or training, or that painkillers can't control, is not a normal amount of pain. You can say exactly that at the practice and ask specifically about endometriosis.

What the 2025 guideline changes

The German-language guideline of the specialist societies of Germany, Austria and Switzerland was revised in April 2025. It bases diagnosis and treatment more closely on each person's symptoms. Transvaginal ultrasound is now the central examination. As the first treatment it recommends hormone therapy; surgery and other approaches are added depending on the symptoms.

Among the treatments, the WHO lists painkillers, hormonal medicines and, for some, surgery. It mentions physiotherapy and cognitive behavioural therapy as part of care involving several specialties.

What you can bring

Notes over a few cycles make the conversation more concrete: when the pain comes, how strong it is, whether it is linked to your period. In Rhythmus you can log cramps and tiredness daily; after a few cycles, “Your pattern” in History shows whether something keeps coming back at the same point. It doesn't replace a diagnosis.

Sources

  1. World Health Organization (2025): Endometriosis – Fact sheet. WHO, 15. Oktober 2025. View source
  2. Burghaus, S., Schäfer, S. D., Bär, K. J. et al. (2026): Diagnosis and Therapy of Endometriosis. Guideline of the DGGG, OEGGG and SGGG (S2k-Level, AWMF Registry No. 015/045, April 2025). Geburtshilfe und Frauenheilkunde 86(2), 133–188. View source
  3. De Corte, P., Klinghardt, M., von Stockum, S. et al. (2025): Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics – A Systematic Literature Review. BJOG 132(2), 118–130. View source

The complete list of sources is in the app under Help & FAQ.

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