Status: 03/18/2023 10:41 a.m
Endometriosis is an incurable and little-researched disease. In Germany alone there are around 40,000 new cases every year – the need for better diagnostic and therapeutic options is high.
Endometriosis is one of the most common gynecological diseases and is still largely unexplored. The diagnosis still takes a long time and the cause is unknown.
An estimated 10% of people of childbearing age are affected by endometriosis. Childbearing – these are all people with a uterus who get their period: girls and women, but also, for example, genderqueer and trans people. Information from the World Health Organization according to endometriosis affects about 190 million people worldwide. Those affected usually suffer from severe menstrual pain.
But that’s not the only symptom. Chronic abdominal pain, severe exhaustion, nausea and vomiting as well as pain during sexual intercourse also occur with the disease. Sometimes a normal professional and social life is hardly possible. Because the list of possible symptoms is long, the clinical picture is individual and the effects are often hidden, the disease is considered the “chameleon of gynaecology”.
Possible reason for infertility
Basically, the following happens in the body: In the case of endometriosis, special mucous membrane cells settle outside the uterus, for example in the abdominal or pelvic cavity or on the vaginal wall. However, adjacent organs such as the intestines and bladder can also be affected, more rarely even the diaphragm or lungs. Benign growths develop there due to the womb-like tissue.
These so-called endometriosis foci change like the lining of the uterus due to the menstrual cycle. During the menstrual cycle, the uterine lining builds up to allow a fertilized egg to implant. If no egg nests, the mucous membrane is excreted with the period. This is not possible in the intestines or bladder, for example – which is why adhesions, inflammation and fluid-filled, encapsulated cavities in the tissue occur: cysts.
Such cysts sometimes form on the ovaries or fallopian tubes – and can impair fertility. According to estimates, endometriosis could be the reason for 40 to 60 percent of women who are unable to have children.
No healing possible yet
There is still no definitive cure for endometriosis. After the menopause, the symptoms usually subside, but then the ordeal was very long: women have their last menstrual period on average at the age of 51. The treatment options offer different chances of success.
A hormonal treatment of the disease – for example with the birth control pill or progestins – can relieve the symptoms. But especially for people who want to have children, treatment with contraceptives is not suitable as therapy. In addition to hormonal treatment, surgical interventions are also possible. With a laparoscopy, for example, the endometriosis foci can be identified and removed in a minimally invasive manner. The uterus or the ovaries and fallopian tubes can also be removed if they are affected.
Even if the symptoms are alleviated as a result or disappear completely: it cannot be ruled out that endometriosis foci will grow back despite the intervention. Because of the pain, many resort to high-dose painkillers – but given the side effects, this is not a permanent solution.
Pain diary facilitates diagnosis
Period pain, which can only be endured with painkillers or antispasmodics, is in any case an alarm signal for endometriosis. If the pain is persistent, you should “be suspicious”, as Juliane Grimm, spokeswoman for the endometriosis center at the University Hospital Freiburg, in an interview with the SWRexplained.
However, since research into endometriosis is still in its infancy and there are only a few specialists in the field, it usually takes many years to diagnose it. Grimm expects an improvement over the next few years, and awareness of the disease has become much greater.
Diagnosis by ultrasound or magnetic resonance imaging is not possible for all types of endometriosis, she explains. “That’s why the gold standard is unfortunately still the laparoscopy, which means: an operation,” says the doctor. In many cases, found endometriosis foci are then removed directly.
Doctors can make the diagnosis easier if those affected keep a pain diary. For example, there is one Submission of the German Endometriosis Association or apps that can even be prescribed on prescription.
More money for research
A new saliva test also gives hope. Advantage: It is risk-free and non-invasive – but the data on its effectiveness is still sparse. In addition, the costs are very high. The statutory health insurance companies do not currently cover this.
Apart from that, blood tests and alternative therapies are also being researched. And: Endometriosis research gets more money. Last fall, the budget committee of the Bundestag approved research funding of five million euros – an important sign in the fight against this disease, which affects many and is more than a little stomach ache.