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 abnormal growth of the uterine lining outside the uterine cavity in the pelvic area, but also in various other places in the entire 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 all the time (chronic pain). 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.
Affected women experience severe pain, especially during menstruation. In addition, many affected people have difficulty getting pregnant.
Although the growths themselves are benign, severe symptoms and complications can occur.
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 – and nutritional factors also appear 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 also affect other organs, such as the liver, lungs or even the brain, which cannot be explained by the theory of retrograde menstruation. 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 the vast majority of cases, these are distributed in the pelvic cavity on the peritoneum (especially in the Douglas space) and lead to 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 symptoms mentioned occur depending on the menstrual cycle. This cycle dependency can also be absent in long-term courses. 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.
The proliferation of the uterine lining 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 tubes. 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. This is why many women with endometriosis have difficulties getting pregnant. However, if endometriosis is detected, help can be provided either by surgery or direct treatment by a 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. This is usually followed by a gynecological examination incl. Palpation examination.
Ultrasound examinations are particularly important, as certain forms of endometriosis (e.g. so-called
endometriomas/chocolate cysts on the ovary) can be diagnosed directly by ultrasound. Experienced examiners can also detect adhesions, adhesions of the organs and endometriosis nodes (deep infiltrating endometriosis).
If deep infiltrating endometriosis is suspected, magnetic resonance imaging (MRI) is also carried out in certain cases. It allows a more precise view of the localization of the endometriosis nodes and can also show areas outside the pelvis.
Rarely, blood may be present in the stool with this form of endometriosis. In this case, we recommend a colonoscopy.
In the most common form, known as peritoneal endometriosis, there are only very small or flat endometriosis lesions in the abdominal cavity. This form cannot currently be visualized by ultrasound or MRI.
These cases can only be made visible with a small operation – a laparoscopy: A tiny camera is inserted into the abdominal cavity through a small incision in the navel and the peritoneum and pelvic organs are viewed with a slight magnification of the camera image so that even millimeter-sized endometriosis lesions can be detected. If the suspicion is confirmed, we can also remove the herd directly. But don’t worry – surgery is only necessary in certain cases of peritoneal endometriosis.
Taking hormonal therapy (a special contraceptive pill) on a trial basis can often be helpful: if the pain disappears while taking the pill, there is a high probability that endometriosis is present. For most women, this method helps against pelvic pain.
In unclear cases or those in which other diseases are also a possible cause of the symptoms, it is also possible to clarify the presence of endometriosis using a saliva test.
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.
Endometriosis consultation
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What endometriosis means for affected women in everyday life can be completely independent of the size and location of the proliferating mucous membrane. 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 reappear as soon as the endometriosis starts to grow again. Hormone therapy is therefore important as a preventive but also pain-relieving measure. 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 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. Medication and surgery are available to combat the symptoms:
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.
In choosing the right therapy, it is important to adapt it to you individually. During the consultation, we will work together to develop a treatment plan for you and your situation. Register via online form.
