Endometriosis is a chronic, often painful illness in which tissue resembling the mucous membrane lining of the uterus settles outside the uterus itself. The exact causes are not yet fully understood. Nevertheless, endometriosis is one of the most common gynaecological illnesses and, despite its widespread prevalence, often goes unrecognised for a long time. It is estimated that about 6 to 10 percent of women of childbearing age are affected.

Illustration of a uterus with endometriosis nodes

Endometriosis at a glance

Endometriosis is one of the most common abdominal disorders in women. Cells that are very similar to the mucous membrane lining of the womb accumulate outside the uterine cavity. These ‘islands’ of tissue are particularly common in the pelvic area, such as on the ovaries, peritoneum or between the vagina and intestines. In rare cases, endometriosis can also affect other areas of the abdominal cavity – including organs such as the intestines, the bladder or, in exceptional cases, even the lungs. 

These patches of abnormal tissue, known as endometrial or endometriotic lesions, react to hormonal changes during the menstrual cycle and cause inflammatory reactions in the surrounding tissue, especially before and during menstruation, which can lead to severe pain. In many cases, the disease goes undetected for a long time and can affect fertility, amongst other things.

Causes and risk factors for endometriosis

The cause of endometriosis is not fully understood. It is thought that, during a woman’s period, some of their menstrual blood flows upwards through the fallopian tubes and into the abdominal cavity. This menstrual blood contains viable uterine mucous membrane cells that can settle in the abdomen. The resulting endometriotic lesions react to hormonal changes in the menstrual cycle in a similar way to the mucous membrane in the uterus. This means that the tissue undergoes regular phases of build-up and degradation even though it is outside the womb. 

Unlike during normal menstruation, the rejected tissue cannot be excreted via the vagina, but remains in the abdominal cavity, usually near the affected area. This can lead to irritation and inflammation, which can later cause adhesions or cysts.

It is still unclear why some women develop endometriosis and others do not – but research suggests a combination of several risk factors. The following risk factors provide an overview of the latest findings.

Hormonal effects

Hormonal factors are not considered to be the direct cause of endometriosis, but they can significantly influence the growth and activity of the affected cell structures. The interaction between the hormones oestrogen and progesterone plays a key role. Oestrogen promotes the formation of tissue similar to the uterine mucous membrane, while progesterone usually slows down this process. 

In many affected women, this protective function by progesterone appears to be diminished – either they are relatively deficient in it or the tissue responds less to the hormone. This allows the endometrium-like cellular tissue to spread more easily and inflammatory processes to intensify.

Family predisposition

Endometriosis often runs in families. If close relatives such as your mother or sister are affected, your risk is significantly increased. Studies show that daughters of affected women are up to six times more likely to develop endometriosis during their lifetime.

Frequency of menstruation and early menarche

Women who go through many menstrual cycles in their lives appear to be at increased risk of endometriosis. Particularly affected are women who get their first period very early, menstruate frequently (i.e. have short menstrual cycles), suffer from heavy or prolonged bleeding, or do not experience prolonged hormonal interruptions – for example due to pregnancies or certain hormonal contraceptives.

Certain anatomical changes

Congenital malformations of the uterus or vagina that interfere with the normal flow of menstrual blood may increase the likelihood that menstrual blood, together with uterine mucous membrane cells, will enter the abdomen (retrograde menstruation).

Immune system and environmental factors

A weakened or misdirected immune system could also play a role, as it usually prevents tissue from settling in unusual places in the body.

Symptoms of endometriosis

The symptoms of endometriosis are often non-specific, and they vary depending on the location and severity of the lesions. The symptoms typically occur in connection with menstruation, which is why they are often misdiagnosed as ‘normal period pains’. It is particularly noticeable if period pains only develop or become increasingly pronounced over several years – a pattern known as secondary dysmenorrhoea. This is a clear warning sign and a possible indication of endometriosis.

Other typical symptoms of endometriosis include:    

  • Severe pain in the lower abdomen that starts a few days before menstruation
  • Permanent lower abdominal pain
  • Back pain
  • Pain during sex
  • Lack of energy and drive
  • Difficulty urinating (bladder) or emptying the bowels (gut)

The type and location of the symptoms depend on where the tissue resembling the uterine mucous membrane has settled in the body. Endometriotic lesions are most commonly found in the pelvic cavity, where they typically cause severe menstrual pain. If the tissue is close to the vagina, pain can occur during sexual intercourse, as the affected areas are sensitive to pressure and movement. 

Endometriotic lesions in the bladder often lead to irritation, which can manifest itself in an increased urge to urinate. If the lesions penetrate deeper into the bladder wall, blood can also occur in the urine in rare cases. If the bowel is affected, many women report pain when passing stools. In very rare cases, involvement of the intestinal mucosa can also lead to blood in the stool.

It is typical in endometriosis for the symptoms to be related to the menstrual cycle. However, with long-term symptoms, this cycle dependency can disappear and the pain can then persist permanently, as the nerves involved become chronically irritated.

Infertility due to endometriosis

Detection of the disease is particularly important because it is often the cause of infertility, especially if endometriotic lesions are located in the ovaries or fallopian tubes. In some cases, endometriotic lesions can stick the fallopian tubes together or damage the ovarian tissue, impeding the transport of the egg or making fertilisation more difficult. 

More often, however, the inflammation in the pelvic cavity caused by endometriosis disrupts the balance of the reproductive system and thus impairs both the fertilisation of the egg and its implantation in the uterus. Almost half of all women with an unfulfilled desire to conceive are affected by this illness.

Pregnancy despite endometriosis

If endometriosis has been preventing pregnancy over a long period of time, targeted treatment can improve fertility. Possible options include hormonal therapies or surgical interventions to remove endometriotic lesions. Depending on the individual situation, fertility treatment, such as artificial insemination or in vitro fertilisation (IVF), may also be helpful. In the latter case, the egg is fertilised outside the body and then inserted directly into the uterus.

Diagnosing endometriosis

Endometriosis is often only detected late, with an average delay of around ten years between the initial onset of symptoms and diagnosis. Anyone who notices that they have typical symptoms of the disease should therefore not hesitate to seek medical advice as soon as possible.

The first step is usually a detailed consultation with the gynaecologist, in which your personal medical history is recorded. This is followed by a physical examination (palpation) of the lower abdomen. In some cases, endometriotic lesions in the area between the intestine and the vagina can already be felt by the doctor. 

This is usually followed by an ultrasound examination through the vagina, known as transvaginal sonography, which can be used to make deeper changes more visible. An ultrasound examination of the abdomen is also carried out to detect accumulations outside the womb. Sometimes further examinations, such as an MRI or even a laparoscopy, are necessary.

Treatment

Although there is no cure as yet, the symptoms caused by endometriosis can often be treated well with medication and surgical interventions. The following treatment methods are available:

Anti-inflammatory painkillers

Medicines such as ibuprofen or diclofenac are often used to relieve acute symptoms. They have a pain-relieving effect and inhibit the inflammatory processes in the affected structures.

Hormonal therapy

Since the hormone oestrogen promotes the growth of endometriosis sites, hormonal treatments aim to lower oestrogen levels and suppress the menstrual cycle. Hormonal preparations such as progestogens, the contraceptive pill or GnRH analogues are used.

Surgery

In certain cases, a surgical intervention can be useful to remove sites of endometriosis or to loosen adhesions. This is usually performed using a minimally invasive method of laparoscopy.

Alternative methods of pain management

Complementary procedures such as acupuncture, physiotherapy, relaxation techniques or nutritional adjustments can also help alleviate the symptoms.

The choice of treatment depends, among other things, on whether you want children or whether you already consider your family to be complete. Most hormonal treatments suppress ovulation and have a contraceptive effect. They are therefore particularly suitable if you are not currently planning to become pregnant. 

If, however, you do want to have a baby, hormonal therapies are avoided in many cases and surgery to remove the endometriotic lesions may be advisable instead. The exact locations, extent and spread of the lesions also play a decisive role in the choice of treatment.

Prevention

Unfortunately, there is currently no way to specifically prevent endometriosis. This makes it all the more important to listen to your own body: if you regularly suffer from severe period pain, noticeable problems relating to your menstrual cycle or other complaints, you should take it seriously and seek medical advice. This is because the earlier endometriosis is detected, the better it can be treated.

Frequently asked questions about endometriosis

What exactly is endometriosis?

Endometriosis is a chronic illness in which tissue resembling the mucous membrane lining of the womb grows outside the uterus, for example on the ovaries, peritoneum or bladder. This tissue responds to the monthly cycle and can cause pain, inflammation and, in some cases, infertility.

Is endometriosis curable?

There is currently no cure for endometriosis. However, with the right treatment, such as anti-inflammatory medication, hormonal therapies or minimally invasive surgeries, the symptoms can in many cases be effectively alleviated and quality of life significantly improved.

How does endometriosis manifest itself?

Typical symptoms include severe period pain, pain during sexual intercourse, urination or bowel movements, and infertility. However, some women have hardly any symptoms, so the disease can go unnoticed for a long time.

Can I get pregnant despite endometriosis?

Yes, in principle, pregnancy is possible despite endometriosis. Some women become pregnant without treatment, while others require medical support, such as surgical removal of endometriotic lesions or procedures such as artificial insemination. Which steps are appropriate always depends on the individual diagnosis and the extent of the illness.

What helps alleviate the pain caused by endometriosis?

Depending on the severity of the symptoms, anti-inflammatory painkillers, hormonal therapies or surgical interventions may be considered. Alternative methods such as acupuncture, heat treatments or physiotherapy can also help.

Does endometriosis get better on its own at some point?

In some women, the symptoms improve after the menopause, as hormonal activity, especially oestrogen production, naturally decreases.

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