How is endometriosis diagnosed?

Endometriosis diagnosis takes an average of 7-10 years. The only reliable method is laparoscopy - and the result depends on the surgeon's experience. Find out what the diagnostic pathway looks like and how to prepare for it.

How is endometriosis diagnosed?

Diagnosing endometriosis is complex and unfortunately time-consuming. The average time from first symptoms to diagnosis is 7 to 10 years, and in some countries and situations even longer. Symptoms are frequently overlooked, confused with other conditions or dismissed as "normal menstrual pain".

The earlier a diagnosis is made, the more treatment options you have and the smaller the long-term consequences for your health and fertility.

Why does diagnosis take so long?

  • Symptoms resemble other conditions - irritable bowel syndrome, pelvic inflammatory disease or other gynaecological problems
  • Many women become accustomed to the pain and don't consider it a reason to seek medical attention
  • Standard ultrasound misses most lesions
  • The only reliable method is a surgical procedure - laparoscopy
  • Awareness of endometriosis remains insufficient even among primary care physicians
  • Many women are not referred to a specialist in time

Experts at endometriosis.org aptly note: "The incidence of the diagnosis of endometriosis is down to the curiosity of the surgeon and the pathologist." This means that the experience and focus of the doctor plays a key role in diagnosis.

How to prepare for your first consultation

A well-prepared patient helps the doctor reach the correct diagnosis more quickly. Before your appointment, note down:

  • Character and intensity of pain - where you feel pain, how severe it is on a scale of 1-10, what makes it worse or better
  • Relationship of pain to the menstrual cycle - when exactly it starts, how long it lasts, does it change throughout the cycle?
  • All symptoms - not just pain, but also fatigue, bowel or bladder problems, pain during intercourse
  • Duration of complaints - how long you have had symptoms, have they worsened over time?
  • Family history - did your mother, sister or other relative have endometriosis?
  • Previous treatment - what medications or methods you have tried and how they worked

Don't be afraid to neither understate nor exaggerate your pain - describing your symptoms exactly as you experience them is the most important information you can give your doctor.

The diagnostic pathway - step by step

1. Gynaecological examination

During a gynaecological examination, the doctor may feel painful nodules or detect immobility of the uterus caused by adhesions. This examination alone cannot confirm the diagnosis, but may raise suspicion of endometriosis and direct further investigation.

2. Ultrasound

Transvaginal ultrasound is the standard first step in imaging. However, a standard ultrasound only detects larger endometriomas on the ovaries - superficial lesions and deep endometriosis are usually not revealed.

Specialist ultrasound performed by a sonographer experienced in endometriosis can detect deeper lesions - particularly in the area of the rectovaginal septum, bowel or bladder. The quality of the ultrasound depends fundamentally on the examiner's experience.

3. MRI

Magnetic resonance imaging (MRI) provides more detailed imaging of soft tissue and helps detect deep infiltrating endometriosis, bowel or urinary tract involvement. MRI is valuable in planning surgical treatment - the doctor can see the extent of disease before the operation and prepare an optimal approach.

Even MRI cannot reliably confirm or exclude endometriosis - small superficial lesions are too small to be detected.

4. Laparoscopy - the only reliable diagnosis

Laparoscopy with histological confirmation of tissue is the gold standard for diagnosing endometriosis. It is a minimally invasive surgical procedure under general anaesthesia, during which the doctor inserts a small camera into the abdominal cavity, directly inspects the pelvic organs, takes a tissue sample and simultaneously removes any lesions found.

Important warning: The result of laparoscopy depends on the surgeon's experience. A non-specialist doctor may miss lesions or misinterpret findings - resulting in a false negative that further delays diagnosis. We therefore recommend laparoscopy be performed at a specialist centre.

Blood tests and CA-125

The blood test for the marker CA-125 is sometimes mentioned in connection with endometriosis. However, its results are very unreliable - it may be elevated in other conditions and is often normal in endometriosis. It is insufficient for diagnosis on its own and is not recommended as a screening test.

Currently, no blood test or imaging method can reliably confirm endometriosis without laparoscopy.

Who to contact?

  1. Describe your symptoms to your doctor accurately and openly - don't minimise your pain, bring written notes
  2. Ask for specialist ultrasound with a sonographer experienced in endometriosis
  3. Ask for referral to a specialist - ideally to an endometriosis centre
  4. Persist - if your doctor says everything is fine but you know it isn't, seek a second opinion from a specialist

Our centre specialises in the diagnosis and treatment of endometriosis, including the most complex forms. Appointments can be made online - we respond within 24 hours.

Further information on diagnosis: endometriosis.org - Diagnosis.