The lining of the uterus builds up in the uterus to create a place for the fertilized egg to implant. Sometimes, however, these mucosal cells settle outside the uterus and proliferate driven by the hormonal cycle, leading to pain and scarring due to the inflammation they cause.

Overview: What is endometriosis?

We refer to the endometrium as the lining of the uterus. Endometriosis is the pathological proliferation of the endometrium outside the uterine cavity in the pelvic area, but also in various other locations throughout the abdominal cavity. The intestines or even the lungs can also be affected. Most often, they are only small foci – resembling a birthmark on the skin – but sometimes they are large ovarian cysts. They all grow and bleed along with the sex hormone driven menstrual cycle, causing a local inflammatory response. As a result, affected individuals suffer from pain in this area due to the irritated nerves caused by the inflammation. Particularly during menstruation, affected women then experience severe pain. In addition, many affected people have difficulty getting pregnant.

Sometimes their stomach hurts continuously as well. Thus, central to endometriosis is the interaction between the resulting inflammation and nerve irritation. The motor behind this are the sex hormones.

Another problem is that endometriosis can be a common reason that a woman cannot get pregnant.

Endometriosis: frequency and age

It is not uncommon for patients to suffer for more than five years before they are diagnosed with endometriosis. Nevertheless, many women live with this problem without knowing about it. It is estimated that around six to ten percent of all women of childbearing age suffer from endometriosis. In Switzerland, this means around 190,000 to 280,000 women. About one in four women who do not become pregnant spontaneously suffers from endometriosis.

Particularly during menstruation, affected women then experience severe pain. In addition, many affected people have difficulty getting pregnant.

Endometriosis: causes and risk factors

Why in some women the mucosa from the uterus settles within the pelvis and abdomen is still unclear in detail. Accordingly, the development of endometriosis cannot be prevented. It occurs more frequently in some families than in others. If the mother suffered from endometriosis, the daughter has a six times higher risk of also suffering from endometriosis during her reproductive years. Despite this familial clustering, no single endometriosis gene has yet been found. Environmental influences – in the womb, in the neonatal period – as well as nutritional factors also seem to play a role.

A possible explanation for the development of endometriosis is so-called “retrograde menstruation”: Instead of the menstrual blood flowing completely through the cervix into the vagina, part of the menstrual blood enters the abdominal cavity through the fallopian tubes together with exfoliated endometrial cells. The inflammation caused by this leads to severe pain by irritating the nerves. This theory can explain the most common sites, which are affected with endometriosis in the abdomen. In addition, there are still cases where the endometrial cells can enter the muscular layers of the uterine wall through tiny openings/micro-injuries and proliferate there as well. In this case we speak of adenomyosis, a close relative of endometriosis.

In rare cases, endometriosis can affect other organs such as the liver, lungs, or even the brain, which cannot be explained by the retrograde menstruation theory. In these cases, endometriosis appears to arise directly on the affected organs, as so-called cells of origin mistakenly develop into endometriosis cells instead of, for example, in the case of the liver, liver cells.

After the end of menopause, new cells of endometriosis no longer grow, since the drive for this ceases due to the discontinuation of female sex hormones.

Symptoms of endometriosis

Very often, women tell of severe pain during menses with frequent use of painkillers and sick leave. If this pain has only developed over the years (so-called “secondary dysmenorrhea”), endometriosis is most likely present.

The following symptoms are still possible:

  • Pain during sexual intercourse
  • Bloating during menstruation
  • Abdominal pain regardless of the timing of menstruation
  • Back pain
  • disturbed menstrual cycle (intermittent bleeding, prolonged or heavier bleeding)
  • noticeable fatigue and exhaustion
  • increased susceptibility to infections, especially during menstruation
  • Blood in urine
  • Blood in the intestine

Where the pain occurs depends on where the mucosal tissue has settled. In most cases, they are distributed in the pelvic cavity to the peritoneum and cause severe pain during the period. If endometriosis lesions are found in the vaginal area, they can cause pain during sexual intercourse by touching.

If the focus of the disease is on the bladder, it becomes irritated and one feels frequent urge to urinate. In rare cases, when such a focus grows deep into the urinary bladder, blood may even be found in the urine. If the bowel is affected, affected women report severe pain during defecation and may even have blood in their stool if the bowel is breached. It is typical for endometriosis if the above-mentioned complaints occur in dependence on the menstrual cycle. In the case of long-term courses, this cycle dependence may also be absent. The nerves that transmit the pain signals from these foci are then permanently “irritated”. Endometriosis on the ovary – so-called endometriomas or chocolate cysts – rarely cause pain on their own, but are often associated with the simultaneous occurrence of a severe form of endometriosis called “deep infiltrating endometriosis”.

When the endometriosis focus is in the muscular layer of the uterus, menstruation usually comes in a strikingly heavy and prolonged manner.

Illustration organs and endometriosis lesions

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Infertility due to endometriosis

The proliferation of the endometrium can directly scar the fallopian tubes or destroy ovarian tissue, making it difficult or impossible to transport the egg to the uterus and fertilize it in the fallopian tube. However, it is much more common that endometriosis seems to indirectly hinder the process of fertilization and implantation in the uterine cavity due to the regional inflammatory situation. That is why many women with endometriosis have difficulty getting pregnant. However, once endometriosis is detected, it can be helped either by surgery or by direct treatment by the fertility specialist.

Endometriosis: diagnosis with us

The basis of the diagnosis of endometriosis is the assessment of the exact symptoms. If you can describe to us in as much detail as possible when, where and in what situation the pain occurs, this will help us to make a diagnosis. An unfulfilled desire to have children is just as much a part of it. During palpation and especially ultrasound examinations, we can in some cases already detect endometriosis lesions, for example, so-called endometriomas/chocolate cysts or polyps. Experienced examiners can also detect adhesions of the organs and endometriosis nodes (deep infiltrating endometriosis). If there is a suspicion of deep infiltrating endometriosis, an attempt can be made to visualize these nodes using magnetic resonance imaging (MRI/MRI). It allows a closer look at the tissue proliferating into the depths.

Rarely, blood may be present in the stool in this form. In this case, we recommend a colonoscopy.

As a test to determine whether endometriosis is present, may be the trial use of hormonal therapy (A special birth control pill): if the pain disappears while taking the pill, the likelihood of the presence of endometriosis is high.

However, the vast majority of cases of endometriosis cannot be detected by imaging due to the small lesions. These cases can only be viewed with a small operation – a so-called laparoscopy: In this procedure, we insert a tiny camera into the abdomen through a small incision in the belly button and view the peritoneum and pelvic organs with a slight magnification of the camera image, allowing millimeter-sized endometriosis lesions to be detected. Through the incision and with the help of the camera, this minimally invasive method also allows us to operate directly if we find that there is proliferating tissue.

Endometriosis: prevention, early detection, prognosis

You cannot prevent endometriosis. However, you should consult a doctor in case of prolonged menstrual irregularities and especially if you experience severe pain during your period. What endometriosis means for affected women in everyday life can be completely independent of the size and location of the wuchenrnden mucosa. Some women do not notice anything, others suffer from the most severe pain.

Endometriosis is treatable but not curable. After surgical removal of the endometriosis, the pain usually subsides, but can recur as soon as the endoemtriosis begins to proliferate again As a preventive but also pain-relieving measure, hormone therapy is therefore important. The treatment of endometriosis is long and often very stressful for women.

Endometriosis does not generally increase the risk of developing cancer. For certain, rare cancers of the ovary, however, endometriosis appears to be clustered with it.

Pregnancy despite endometriosis

Once all endometriosis lesions have been removed, pregnancy is possible in many cases, provided that the fallopian tubes are not blocked. In all other cases, however, this requires in vitro fertilization, i.e. fertilization of the egg outside the body. The fertilized egg is then placed directly into the uterus.

Self-help groups

The exchange with people who are affected by the same disease can be a great support in coping with the disease. Advice on finding a suitable self-help group is available from Selbsthilfe Zürich. Self-Help Zurich and the University Hospital Zurich are cooperation partners in the national project “Health literacy thanks to self-help-friendly hospitals”.

Treatment: with hormones or surgery

There is no way to cure endometriosis yet. There are several ways to combat the discomfort:

  • Anti-inflammatory painkillers
  • Hormonal therapy
  • Surgery
  • alternative methods of pain relief

Which of these methods is chosen depends, on the one hand, on whether the woman concerned wants to have children or whether family planning has already been completed. Second, treatment depends on exactly where the endometriosis is located and how large it is. If a woman has neither complaints nor a desire to have children, no treatment is necessary.

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