FAQ

Endometriosis is defined as the presence of endometrial-like tissue outside the uterus. Endometriosis triggers a chronic inflammatory reaction resulting in pain and adhesions. Adhesions develop when scar tissue attaches separate structures or organs together. The activity and the complaints due to endometriosis may vary during the woman’s menstrual cycle as hormone levels fluctuate. Consequently, symptoms may be worse at certain times in the cycle, particularly just prior to and during the woman’s menstrual period. While some women with endometriosis experience severe pelvic pain, others have no symptoms at all or regard their symptoms as simply being ‘ordinary menstrual pain’. In rare instances, cyclical pain can also involve the upper part of the abdomen e.g., under the ribs or the chest.

It is estimated that between 2 and 10% of the women within the general population have endometriosis and that 30% - 50% of the infertile women have endometriosis.

Women with endometriosis often experience severe symptoms and significantly reduced quality of life, including restraint of normal activities, pain/discomfort, and anxiety/ depression.

The cause of endometriosis remains unknown. There are several theories, but none of them has been entirely proven. The most accepted theory is centered on the so-called retrograde menstruation. During menstruation, pieces of endometrium arrive in the abdominal cavity through the Fallopian tubes, adhere to the peritoneal lining and develop into endometriotic lesions. The hormone estrogen is crucial in this process. Subsequently, most of the current treatments for endometriosis attempt to lower estrogen production in a woman’s body in order to relieve her of symptoms.

It has been argued that endometriosis is a genetic disease, since some families show more patients with endometriosis compared to other families. However, it is unlikely that there exists an ‘endometriosis gene’. Other suggestions are an immune response triggering inflammation.

Doctors sometimes get questions from relatives of women with endometriosis on how they can prevent the disease.

Studies investigating whether taking the oral contraceptive pill or regular exercise could prevent endometriosis did not show a clear causal relation and have limitations. Therefore, it is uncertain whether taking the combined oral contraceptive pill or having regular physical exercise will prevent the development of endometriosis. Other interventions have not been studied.

Up to now, there are no known ways to reduce the chance of getting endometriosis.

Although there is no direct evidence of developing endometriosis in the future, you can try to aim for a healthy lifestyle and diet, with reduced alcohol intake and regular physical activity.

The usefulness of hormonal contraceptives for the primary prevention of endometriosis is uncertain.

There are currently no genetic tests that can indicate a risk of endometriosis in the future. Therefore, genetic testing for endometriosis should only be performed within a research setting.

Because the symptoms of endometriosis are not very specific, the diagnosis of endometriosis cannot be made by the symptoms alone. However, symptoms can give a doctor a first hint towards the diagnosis of endometriosis.

The symptoms of endometriosis are:

• Painful menstrual periods (dysmenorrhea)
• Non-menstrual pelvic pain or pain occurring when a woman is not menstruating.
• Pain during or after sexual intercourse (dyspareunia)
• Pain emptying bladder/painful urination (dysuria)
• Pain emptying bowel (dyschezia)
• Painful rectal bleeding or the presence of blood in the urine (haematuria)
• Shoulder tip pain
• Cyclical lung problems (pneumothorax)
• Cyclical cough, chest pain, or coughing of blood (haemoptysis)
• Cyclical scar swelling and pain
• Fatigue
• Infertility
• Any other cyclical symptom

Cyclical symptoms are symptoms that develop a few days before a woman’s menstruation and disappear a few days after her menstruation has stopped, or symptoms that occur only during the menstruation. The symptoms reappear the next month, following the woman’s menstrual cycle.

Severe pain can be measured by not doing your normal daily activities (without taking pain medication).

If you experience one or more of these symptoms and they cause you (severe) pain, you should go to your family doctor or to your gynecologist and ask him to consider endometriosis.

In addition to your symptoms, clinical examination can provide additional information to the doctor. However, there is little scientific evidence for the value of certain clinical signs to come to the diagnosis of endometriosis.

During clinical vaginal examination the doctor looks for tenderness, nodules or swelling of the vaginal wall especially in the deepest point of the vagina between the back of the uterus and the rectum by inspection using the speculum and by palpation using his/her fingers. In women with deep endometriosis or endometriosis of the ovaries, clinical examination may give considerable information regarding the proper diagnosis, while in peritoneal disease the clinical examination most of the time is completely normal.

A definite diagnosis of endometriosis was previously only considered when the doctor had seen the endometriosis lesions during laparoscopy and confirmed the diagnosis by taking pieces of tissue (biopsies) for microscopic examination (histology). While, with improving imaging techniques, it is now agreed that endometriosis can be diagnosed without laparoscopy, a laparoscopy for diagnosis and treatment of suspected endometriosis is still recommended if no endometriosis was detected with ultrasound or MRI and medical treatment did not resolve the symptoms.

Medical treatments for endometriosis include hormone treatments or pain medication (analgesics).

Analgesics, like non-steroidal anti-inflammatory drugs (NSAIDs), are medical therapies that influence how the body experiences pain. These therapies are not specific for endometriosis-associated pain, and they do not alter any disease mechanism in the body like the hormone treatments do. Analgesics have little side-effects, they are cheap, easily accessible, and widely used, but very little studies have investigated whether they actually help in reducing endometriosis-associated pain. Long-term use of NSAIDs can be associated with side-effects, such as stomach problems. Therefore, considering protection of the stomach is advisable.

Hormonal treatments in clinical use are:

- Hormonal contraceptives (cyclical use or continuously)

- Progestogens, including intrauterine devices

- GnRH agonists

- GnRH antagonists

- Aromatase inhibitors

While effective for treating endometriosis-associated pain, hormone treatments may also induce side-effects such as headaches, acne, weight gain, vaginal spotting, fatigue, and hot flushes. Side-effects differ strongly between treatments and between patients. As a result, a certain treatment can be a good option for one woman, but the same treatment can have severe side-effects in another woman. Also, different drugs within one of the hormone groups may work differently in individuals, i.e., it may take some time and patience to find the right treatment for you which works and does not cause side effects. Your doctor should discuss side-effects with you when prescribing hormonal treatment.

In 2022, ESHRE European Society of Human Reproduction and Embryology, elaborated on recent data for non-medical management strategies for relieving endometriosis associated pain, and improving quality of life by including more recent studies on acupuncture, physical therapies, psychological interventions, electrotherapy and traditional Chinese medicine and nutrition. For more info please visit HERE