Endometriosis: symptoms and therapy

Scattered tissue of the lining of the uterus – it is estimated that every tenth woman in Germany suffers from it. Nevertheless, it sometimes takes years before the correct diagnosis is made. Endometriosis is one of the most common diseases in women of sexual maturity. For about every third of women who remain childless unintentionally, she is the cause behind it. What exactly is endometriosis, how do you recognize it, and how can you treat it?

The lining of the uterus: construction and breakdown in constant alternation

The endometrium, the womb’s lining, is a dormant tissue during childhood. Only with the onset of puberty and the increasing level of estrogen in the blood does it begin to grow to prepare the uterus for the implantation of a child until the first menstrual bleeding occurs, during which the extra mucous membrane is shed. From then on, the endometrium is subject to constant change.

Under the influence of estrogen, the lining of the uterus is built up during each menstrual cycle. It continues to grow through an interaction of estrogens and progestins until it finally matures at ovulation. She is now ready to pick up an egg. If the egg is now fertilized, it can nest in the uterine lining, and the development of a new life begins.

Without fertilization, the body no longer needs this mucous membrane layer. The hormones fall off, the layer disintegrates and is shed. This causes bleeding. After that, the structure of the mucous membrane begins again. Only with the onset of menopause and the drop in estrogen levels does this cycle finally stop.

 

What is endometriosis?

Endometriosis is derived from the endometrium, the lining of the uterus. In addition to the inside of the uterus, it can also settle in other places, for example, in the fallopian tubes on the ovary or in the abdomen, but also deep in the uterus muscles. Other locations in the body are possible but relatively rare. For example, endometriosis can also occur in the intestines or the lungs.

If this is the case, the scattered endometrial foci react to the hormones in the blood like the usual lining of the uterus, i.e. they change during each menstrual cycle. However, the blood that is then formed to reject the tissue cannot leave the body through the vagina as usual.

Instead, it flows into the abdominal cavity, for example. From there, it is slowly reabsorbed by the body, but the recurring tissue breakdown outside the uterus causes irritation and inflammation.

Formation of chocolate cysts

In the long term, this leads to adhesions and changes in the affected areas. If the blood accumulates in an organ, this leads to so-called chocolate cysts, for example, on the ovaries. These cavities filled with coagulated old blood appear brownish – hence the name. In the case of endometriosis, a cyst often develops.

 

Endometriosis: Symptoms

The symptoms can be colourful and unspecific – one of the reasons why the diagnosis is often made late. The symptoms do not necessarily depend on the extent of the endometriosis – small foci can cause severe symptoms, and large foci can only be discovered by chance.

Commonly described symptoms typical of endometriosis are:

• Extremely severe menstrual pain up to fainting spells
• heavy menstrual bleeding beyond menstruation
• Abdominal and back pain that often radiates to the legs
• Pain during or after intercourse
• Pain when urinating or having a bowel movement
• cyclic bleeding from the bladder or bowel
• Flatulence, diarrhoea, upset stomach
• headache

Endometriosis pain is dependent on the menstrual cycle and location.

It is typical of endometriosis that the symptoms often get worse depending on the menstrual cycle and then decrease or disappear again. The peak is one to three days before the onset of bleeding; with the decrease in menstruation, the symptoms also decrease again.

Depending on the location of the endometriosis focus, the symptoms can also be wholly uncharacteristic or occur continuously, for example, if adhesions have already occurred. For example, if the endometriosis is located between the uterus and the intestines, back pain and problems with urination can increase. If there is a focus on the inguinal canal, the affected woman can also suffer from groin pain.

endometriosis and pregnancy

Another symptom of endometriosis can be unwanted childlessness. About 30 to 50 per cent of women who are involuntarily childless have endometriosis. It has not yet been conclusively clarified which factors have an influence here. Endometriosis can lead to reduced mobility until the fallopian tubes become blocked. But autoimmune reactions, changes in the uterus lining or reduced egg cell quality could also play a role.

Even if endometriosis is present, pregnancy is not necessarily ruled out. Surgery can often increase the chances of pregnancy.

 

Endometriosis: diagnosis of the disease

Until now, it has usually taken a long time for women to be diagnosed with endometriosis. This is also because the symptoms can be very different, and, in particular, severe menstrual pain is difficult to classify due to the lack of a direct comparison by the women concerned. If common painkillers hardly help or if the pain is unbearable for days without taking painkillers, medical advice should be sought to be on the safe side. Accompanying symptoms, such as diarrhoea or nausea, can also indicate endometriosis. In some cases, however, endometriosis does not cause increased pain. This makes the diagnosis even more difficult.

If endometriosis is suspected, the doctor will first take a medical history and ask precisely about the symptoms. During the gynaecological examination, it is possible that foci in the vagina can already be identified. If necessary, a palpation examination of the rectum is also carried out.

An ultrasound examination (sonography) of the ovaries and the uterus is then carried out. In this way, any inflammation or organ changes, such as cysts caused by endometriosis, can be detected. However, since cysts can also occur independently of endometriosis, a laparoscopy must be performed if the diagnosis is unclear.

During a laparoscopy, the affected patient is put under general anaesthesia. An endoscope is inserted into the abdominal cavity through a fine incision in the navel. With the help of the endoscope, the doctor can examine the inside of the abdomen and remove possible endometriosis foci directly. The removed tissue is then examined in the laboratory to diagnose endometriosis with certainty.

Sometimes, the blood value CA125 is also collected during the diagnosis. The concentration of this protein, which also serves as a so-called tumour marker, can be increased in endometriosis. However, it is impossible to make a reliable diagnosis of endometriosis simply by taking this blood value.

Saliva test as a new diagnostic option

In autumn 2022, researchers from France presented the results of a new method that could represent a breakthrough in the diagnosis of endometriosis. With the help of a test, specific micro-RNA can be detected in the saliva, which is intended to provide reliable evidence of the presence of endometriosis.

The result of the saliva test is available after about two weeks. According to the researchers, the reliability is almost 100 per cent.

However, it may be a few years before the procedure, available under the name Endo-Test®, can be used routinely. That is why all health insurance companies have not yet covered the costs of around 800 euros as standard. However, if endometriosis is suspected, the attending gynaecologist can recommend reimbursement. This is then checked in the individual case by the health insurance companies.

Endometriosis treatment and surgery

Various hormones more or less interrupt the menstrual cycle and egg maturation so that no more mucous membrane is built up in the uterus. This also calms the endometriosis foci and often even regresses.

Only in the case of endometriosis foci that do not cause any symptoms and do not show any growth tendency can treatment possibly be dispensed with. 

In general, however, the following applies: treatment as early as possible improves the prospects of long-term freedom from symptoms and healing. This also applies to small herds.

Which therapy is ultimately chosen for endometriosis depends on the following factors:

• extension of the disease
• localization of the disease
• age of those affected
• existing desire to have children

In principle, drug and surgical treatment options are available, which can be used individually or combined.

 

Medicines for endometriosis

A criterion for the choice of preparation should always be considering the side effects, as these can be pronounced in some cases.

Hormone therapy alone is more likely to be used for mild, less pronounced endometriosis, with the disadvantage that endometriosis foci reappear relatively often after the hormones are stopped. Hormonal therapy is usually combined with surgical removal of the focus.

As part of hormone therapy, the estrogen level in the body should be reduced since this hormone promotes the growth and development of endometriosis lesions. Therefore (temporarily), symptoms typical of menopause, such as hot flashes, sleep disorders or loss of libido, can occur.

Hormonally active drugs that are used for endometriosis are:

• progestin preparations
• Progestin-estrogen combination preparations ( birth control pills )
• GnRH-Analog

Drug therapy also includes the use of painkillers, which can achieve freedom from pain in the short term. Painkillers that also have an anti-inflammatory effect should be chosen.

surgery and combined therapy

In the case of severe endometriosis or endometriosis-related infertility, surgical therapy is usually advisable. The endometriosis foci are removed with a laser, heat or a scalpel. In most cases, this is done as part of a laparoscopy; an abdominal incision must rarely be made.

Postoperative treatment with hormones usually lasts three to six months after the operation to support the surgical therapy. Surgical removal usually follows this. One then speaks of a combined therapy in three stages.

Surgery followed by drug treatment has the best long-term results and the majority of women who are unable to have children become pregnant afterwards. But even after successful treatment, the disease can recur long-term. By the way: After a pregnancy, endometriosis improves in many cases.

Relaxation techniques and (light) exercise can also help to relieve existing pain.

How do you get endometriosis?

To date, there are only theories about the development of endometriosis. For example, it is discussed that the disease results from uncontrolled growth, whereby the mucous membrane grows into the depths of the uterine muscles or spreads to other organs.

Another hypothesis assumes that cells that have emerged from the same primordial tissue in the womb can transform into endometrium and thus lead to endometriosis. Another theory is that a so-called “retrograde menstruation” creates a suction from the uterus into the fallopian tubes. In this way, uterine lining cells could enter the fallopian tube and the abdominal cavity.

The disease also often runs in families, so a hereditary component must be assumed. However, none of the current theories can adequately explain all the phenomena of endometriosis.

Certain risk factors also appear to increase the likelihood of developing endometriosis. This includes:

• childlessness
• first occurrence of menstruation before the age of 14
• frequent menstrual bleeding
• low body mass index

 

Endometriosis and Diet

Whether diet plays a role in the development of endometriosis has yet to be definitively clarified. According to study results, frequent consumption of red meat increases the risk, while regular fresh fruit and vegetable consumption can reduce the risk.

According to an Austrian study, a Mediterranean diet with fish, fresh fruit and vegetables, and little red meat should also affect the pain of existing endometriosis. Red meat is pro-inflammatory, which could explain a connection. In general, however, there is still a great need for research in this area.

Prevent endometriosis?

According to current knowledge, preventing endometriosis is impossible or only possible to a minimal extent. At least women can help to ensure that the diagnosis is made early and thus improve their chances of recovery.

Women should not accept severe pain that becomes stronger and weaker depending on the menstrual cycle but should draw the attention of their treating gynaecologist to it at an early stage. If you are unsure, a second opinion from a gynaecologist can also be helpful.

Even if this has been taught to many women for decades, menstruation does not mean that a woman necessarily has severe pain.