Do I Have Endometriosis? Recognizing Symptoms and Understanding the Diagnosis

You cannot diagnose endometriosis yourself, but there are warning signs you can look out for in your body before going to a doctor for examination and diagnosis. These may include very painful periods, pain during sex, or even pain during bowel movements. Otherwise unexplained infertility can also be a symptom. On average, it takes about 6 years to diagnose endometriosis, so it's important to pay attention to the signs if you suspect you are affected. This article will help you recognize them and prepare for your doctor's visit.

Contents

• What is Endometriosis?
• How do you know if you might have endometriosis?
• Complications
• Questions for your doctor
• Where to find help
• Frequently asked questions about endometriosis

What is Endometriosis?

Endometriosis occurs when tissue similar to the tissue that lines the uterus begins to grow in places where it does not belong. This growth can cause painful symptoms that extend beyond the menstrual cycle and can even affect daily life. This tissue can grow in the space behind the uterus, on the ovaries, or in the fallopian tubes. Endometrial tissue behaves similarly to the lining inside the uterus: it thickens, breaks down, and bleeds with each menstrual cycle. However, due to this extra tissue, there may be more severe pain or heavier bleeding during menstruation.

Endometriosis is a relatively common condition, affecting almost one in ten women worldwide. In most cases, it is diagnosed in people aged 20 to 30, but it can occur at any time, from the first menstrual period to menopause. It can affect all individuals who have or have had a uterus.

Unfortunately, medical professionals are not yet entirely sure what causes endometriosis. Possible causes could include retrograde menstruation, where menstrual blood flows back into the pelvic cavity instead of leaving the body. The blood contains cells from the inner uterine lining, which can attach to the pelvic walls, grow, and continue to thicken and bleed with each menstrual cycle. Another possible explanation is that hormonal changes or immune factors can transform cells on the inside of the abdomen into cells similar to those of the uterine lining. Problems with the immune system can prevent the body from recognizing and breaking down endometrial tissue. However, all these topics are still the subject of ongoing research, and experts are not yet able to pinpoint an exact cause.

How do you know if you might have endometriosis?

One of the most common symptoms of endometriosis is severe period pain, so severe that it can prevent you from performing everyday activities. In addition, pain outside of menstruation may occur in the pelvic area or lower back. Watch out for unusual pain when going to the toilet or dyspareunia (pain during sexual intercourse), as these can be indicators of endometriosis. Heavy bleeding during your period or even bleeding between periods can be another sign of endometriosis. Besides immense pain and inflammation, endometriosis can also lead to infertility. Since it causes tissue to grow in places where it does not belong, this can affect how egg and sperm meet during fertilization. These are the more common symptoms of endometriosis, so look out for them if you suspect you have this condition.

There is no correlation between the severity of symptoms and the severity of the disease. Some people have severe endometriosis but experience no pain. On the other hand, some people may experience severe pain even though they only have relatively small endometriotic lesions. Some people with endometriosis even have no symptoms at all and only find out about their condition after surgery for other reasons or during an infertility workup.

Severe pain is not normal, and you should not try to ignore or downplay it. Pain should not be so debilitating that it affects your daily life or impacts school, work, or your social life. If you feel that your pain has been dismissed or considered "normal," you are not alone. According to the Endometriosis Network Canada, 8 out of 10 people who were later diagnosed with endometriosis initially had their pain labeled as normal. Your pain and experiences should not be ignored. Instead, you should seek help and solutions to alleviate your symptoms, part of which may involve getting a diagnosis if you believe you have endometriosis.

There are several ways a medical professional tests for endometriosis. Doctors will likely start with a physical exam and ask about symptoms and pain levels. They may perform a pelvic exam to check for unusual changes such as cysts, painful areas, growths, or scar tissue. An ultrasound may also be performed to look for cysts, but this cannot provide a definitive diagnosis. Another option is magnetic resonance imaging (MRI), which uses a magnetic field and radio waves to visualize endometrial lesions. Blood tests may be performed to rule out other conditions. However, none of these methods are conclusively diagnostic. The only definitive test is laparoscopy, a surgical procedure in which the surgeon examines the inside of the abdomen for endometrial tissue.

The usual diagnostic pathway is generally covered by statutory health insurance at every step. This includes an initial consultation, an ultrasound examination, and, if necessary, an MRI, provided the doctor deems it necessary. In cases of medical indication, statutory health insurance also covers a laparoscopy, although ultrasound and/or MRI should usually be performed first. Laparoscopies are generally only used when imaging does not provide a clear result. However, a saliva test is not covered by statutory health insurance and usually costs patients €799 out of pocket. For privately insured individuals, medically necessary treatment is generally also covered. Since the respective situation differs depending on the individual clinical picture, it is always advisable to consult the treating doctor for any questions.

Complications

Unfortunately, endometriosis can appear similar to many other conditions that cause pelvic pain, including irritable bowel syndrome (IBS), ovarian cysts, or adenomyosis. The diverse and inconsistent symptomatology of endometriosis makes it considerably difficult for some doctors to make the correct diagnosis. In addition, symptoms such as painful cramps are often not severe at first, but worsen over time and spread in their localization. If you are considering whether you may have endometriosis or another condition, pay attention to whether your pain is progressive and cyclical; these characteristics strongly suggest endometriosis. However, the most important step for alarming symptoms remains seeking medical help. There is no self-test for endometriosis, even if you can compare symptoms online or fill out questionnaires. Medical examinations, physical findings, and surgical procedures can help rule out other causes and establish a diagnosis. A doctor can also help clarify open questions and find solutions, whether it is ultimately endometriosis or another condition.

Questions for your doctor (and for you!)

Questions for you before your appointment

Consider why you believe you might have endometriosis. Recall and record pain and other symptoms as accurately as possible, as this can help your doctor better understand your situation.

• Does anyone in your family have endometriosis?
• Are there any other aspects of your medical history that might be relevant to the symptoms you are experiencing?
• What do you want to get out of this conversation? Help with pain management? Information about fertility options? Treatment options? That's up to you and should be tailored to your needs.

Questions for your doctor

• What pain management options are available?
• Are there helpful complementary treatment approaches? Does your doctor have any recommendations?
• Is there any informational material or helpful websites they can recommend?
• What options are available if the chosen treatment method doesn't work?
• How do you know if the current treatment plan isn't working, and when should you seek medical advice again?

Naturally, your questions should be tailored to your individual situation. It is also very important that you feel comfortable and safe with your doctor. If you feel that you cannot openly discuss your symptoms or that you are not being listened to properly, remember: you can always seek another doctor. During these appointments, it is crucial that you feel safe, heard, and taken seriously.

Where to find help

These resources offer reliable information and exchange with other affected individuals:

• Endometriosis Association Germany e.V.
• Self-help groups of the Endometriosis Association

Frequently asked questions about endometriosis

What are the most common signs of endometriosis?

The most common signs include very painful periods, pain outside of the period in the lower abdomen or lower back, pain during sex, and pain during urination or bowel movements. Unexplained infertility can also be a sign. Important: The severity of symptoms does not indicate the severity of the disease.

Can my gynecologist easily detect endometriosis?

Not definitively from a conversation alone. A physical and ultrasound examination can provide clues such as cysts, but they cannot reliably confirm or rule out endometriosis. So far, the only definitive diagnosis is laparoscopy (keyhole surgery).

Can endometriosis be detected in blood?

No. Currently, there is no blood test that reliably detects endometriosis. Blood tests primarily serve to rule out other causes.

Can endometriosis be seen on ultrasound or MRI?

Partially. Ultrasound and MRI can show certain forms like cysts or deeper lesions, but they may miss smaller ones. An inconspicuous finding does not therefore rule out endometriosis.

How much does an endometriosis test cost?

The usual diagnostic pathway (consultation, ultrasound and, if necessary, an MRI and a laparoscopy) is covered by statutory health insurance (GKV) if it is medically necessary. The newer saliva test is currently not covered by the GKV and costs around €799 as an out-of-pocket expense.

Can I have endometriosis without knowing it?

Yes. Some people have extensive lesions but little or no discomfort, and only find out about it by chance, for example during an operation for another reason or during the investigation of unexplained infertility.

What can endometriosis be confused with?

Its symptoms resemble other conditions such as irritable bowel syndrome, ovarian cysts, or adenomyosis. It helps to track symptoms over several cycles, especially whether the pain occurs cyclically and worsens over time.

How long does it take to diagnose on average?

Often a very long time: Studies for Germany show an average delay of around 10 years between the first symptoms and diagnosis, and about 7 years on average for younger people (20 to 30 years). This is precisely why it is worthwhile to pay attention to the warning signs and to have symptoms clarified early.

Sources

1. "Endometriose: Diagnose und Behandlung." BARMER, www.barmer.de/gesundheit-verstehen/wissen/krankheiten-a-z/endometriose-1141252 .
2. "Endometriosis." Cleveland Clinic, my.clevelandclinic.org/health/diseases/10857-endometriosis .
3. "Endometriosis." NHS, www.nhs.uk/conditions/endometriosis/ .
4. "Endometriosis." World Health Organization, 15 Oct. 2025.
5. "Endometriosis Center." Medizinische Hochschule Hannover, www.mhh.de/en/endometriosis-center.
6. "Endometriosis, Diagnosis and Treatment." Mayo Clinic, www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/drc-2035466.
7. "Endometriosis, Symptoms and Causes." Mayo Clinic, www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656.
8. Endometriose-Vereinigung Deutschland e.V. Home. www.endometriose-vereinigung.de/.
9. "Getting Diagnosed." Endometriosis UK, www.endometriosis-uk.org/getting-diagnosed-0 .
10. Heinze, Nicole Rebecca. "Selbstberichtete Kosten von Endometriosebetroffenen in Deutschland." Geburtshilfe und Frauenheilkunde, Thieme, 2024, doi:10.1055/a-2378-3468.
11. Hudelist, G., et al. "Diagnoseverzögerung bei Endometriose, was sind die Ursachen?" Geburtshilfe und Frauenheilkunde, vol. 72, 2012, p. P16. Thieme Connect, doi:10.1055/s-0032-1313659.
12. "Questions to Ask Your Doctor about Endometriosis." Endometriosis Network Canada, endometriosisnetwork.com/questions-to-ask-your-doctor-about-endometriosis/ .
13. "Reimagining Endometriosis." ScienceDirect, 2021, www.sciencedirect.com/science/article/pii/S2666634021001756 .
14. "What Conditions Are Often Mistaken for Endometriosis?" CCRM Fertility, www.ccrmivf.com/news/endometriosis-conditions-mistaken/ .

This article is for general information only and does not replace medical advice. If you experience severe, unusual, or persistent symptoms, please consult your gynecologist.