Facts at a Glance

What is endometriosis, what problems does it cause, what treatment options are available and where can those affected find help? Especially people who are dealing with the female disease for the first time have numerous questions. On this page, we have therefore summarized the most important facts for you

What is endometriosis?

Endometriosis is a chronic female disease in which tissue like the endometrium accumulates in the abdomen, pelvis, and reproductive organs. In rare cases also elsewhere e.g.: Lungs, diaphragm and or outside the abdominal cavity. Both the size and intensity of the tissue growth and the locations of spread vary from woman to woman. The endometriosis cells can bleed according to the cycle and cause inflammation as well as scarring and adhesions.

How does the disease arise?

How exactly endometriosis develops is still unsolved. The only thing that seems certain is that the growth of the tissue (consisting of epithelial and stromal cells) begins under the influence of hormones. Estrogens, which among other things control the menstrual cycle, are primarily involved in this process.

Who can suffer from endometriosis?

Endometriosis particularly affects women in their fertile years, i.e., in the range from the first period to menopause. According to various estimates, 2 to 20 percent of all women in this range are affected. In Germany, there are around 2 million affected people. Approximately 40,000 new cases are diagnosed every year. Endometriosis is thus one of the most common benign gynaecological diseases.

What are the symptoms of endometriosis?

According to current facts, we assume that about 50 percent of all sufferers develop no symptoms or only mild symptoms. In all other cases, sufferers describe the following symptoms:

  • Strong, cramping, long-lasting pain in the lower abdomen during menstruation
  • Cyclic and acyclic lower abdominal pain
  • Pain during sexual intercourse
  • Disturbance of defecation; possibly bleeding from the bowel.
  • Difficult and/or painful urination, possibly bleeding from the bladder.
  • Infertility (unfulfilled desire to have children)
  • Exhaustion and increased susceptibility to infections

How can endometriosis be diagnosed?

First of all, it should be mentioned that it takes on average 6 to 8 years until endometriosis is diagnosed correctly. This is due to the lack of awareness of the disease, but also to deficiencies in medical training.

Briefly outlined, the correct diagnostic pathway consists of the following steps:

    • Exclusion of other diseases (differential diagnoses) by gynaecologists with the help of questioning and examination.
    • If necessary, performance of a so-called pill test (use of a contraceptive for diagnostic purposes)
    • If the suspicion is confirmed: laparoscopy in a hospital or endometriosis centre (list of all certified endometriosis centres)

What therapy options are available?

Endometriosis therapy should always be based on the individual complaints, wishes and goals of the person affected. Overall, the following therapy methods are available, which can also be combined:

  • Pain treatment with analgesics
  • Hormone treatment
  • Surgery with organ-preserving procedure (if necessary, in the context of endoscopic surgery)
  • Alternative and complementary methods

The desire to have children plays a major role in the choice of therapy. If there is no present desire and the findings are rather inconspicuous, hormonal therapy is recommended first. If the findings are extensive and the desire to have a child is present, surgical removal of the endometriosis in combination with hormonal follow-up treatment is considered standard.

Alternative and complementary approaches include osteopathy, traditional Chinese medicine, and homeopathy. Physiotherapeutic measures to correct pain-related malposition are also important. Last but not least, psychological support should be considered and integrated at an early stage.

Can those affected suffer from endometriosis again after surgery?

Unfortunately, according to current research, endometriosis is not curable. Therefore, even after surgery, the disease regularly recurs. Various factors are involved - including the level before the last operation and the chosen therapy method. In moderate cases, medical estimates currently assume a recurrence within 3 to 5 years in around 70 percent of sufferers.

What is the role of Endometriose Dialog e.V. and self-help for those affected?

Ideally, doctors should provide detailed information about endometriosis and all related issues. However, this often happens only very inadequately or superficially due to lack of time or knowledge, so that many aspects remain unclear for those affected. At this point, self-help groups are an important and recommendable supplement.

The Endometriose Dialog e.V. is a contact point for those affected and provides extensive information material. If you are interested in using or supporting our educational work - in any form whatsoever - please feel free to contact us at any time!