In this disease, tissue that resembles the lining of the uterus settles outside the uterus in the abdominal cavity and sometimes causes massive pain. About ten percent of women of childbearing age suffer from endometriosis or the similar adenomyosis, in which the lesions are located in the wall of the uterus. This is what experts recently reported during a health forum South German newspaper.
Even some gynecologists do not have enough awareness of how common and serious these diseases are. “On average, it takes six to ten years from the appearance of the first symptoms until the diagnosis is made,” said Thomas Kolben, head of the Endometriosis Center at the Women’s Clinic at the University of Munich, during the SZ Health Forum. For women it is often an odyssey.
It is important to diagnose and treat the disease as early as possible. The longer the herds spread in the abdominal cavity and lead to adhesions there, the more likely the disease becomes chronic and has numerous negative consequences for mental and physical health. Sven Mahner, director of the women’s clinic at the University of Munich, emphasized that downplaying severe pain during periods as a normality in women’s lives is not only wrong because of the ignorance of women’s suffering, but also with regard to the prognosis. “It’s better to think about this disease sooner rather than later,” says the gynecologist.
“We now have a wide range of treatment options.”
The experts at the forum emphasized that surgery is no longer necessary to diagnose endometriosis. “Examining tissue taken from the abdomen was the gold standard for diagnosing endometriosis. However, a fairly reliable diagnosis is now also possible without opening the abdomen,” said Stefanie Burghaus, head of the Endometriosis Center at Erlangen University Hospital. Ultrasound examinations, tactile findings and a detailed questioning of the patients about their symptoms were usually sufficient. Unlike in the German guidelines on endometriosiswhich is currently being revised, the operation will become a diagnosis in the European guidelines is no longer recommended, says Burghaus, who coordinates the current German guidelines and their revision. “Surgery is the wrong way to make a diagnosis,” added Thomas Kolben – especially since examining the tissue does not always provide reliable information.
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A lot has happened in recent years, not only in the diagnosis but also in the treatment of the disease. “We now have a wide range of treatment options,” explained Stefanie Burghaus. Just last October, a new drug was approved specifically for the treatment of endometriosis.
Treatment usually begins with hormone therapy. Because the pain in endometriosis almost always occurs during the period, at least initially, it usually helps women if they stop having periods due to hormone preparations. The goal is to avoid bleeding, says Burghaus. “The pain usually disappears with the bleeding.”
In the past, women sometimes “took” the contraceptive pill for this purpose, i.e. foregoing the one-week break after taking the pill for three weeks. But this is not the first choice, says the gynecologist. The classic contraceptive pill is a combination preparation containing two types of hormones, a progestogen and an estrogen. “However, estrogen has a negative influence on endometriosis, as we now know; it can support the growth of the lesions and thus increase the symptoms.”
Experts therefore prescribe a preparation that – similar to the mini-pill for contraception – only contains gestagens. However, the progestin preparations used for endometriosis not only prevent ovulation, but also reduce inflammation and the growth of endometriotic tissue. “For most women, this significantly alleviates the symptoms,” said Burghaus.
Since October, Ryeqo has also been available, a drug whose central active ingredient inhibits the body’s own production of sex hormones and which also contains estrogen and progesterone to ensure a certain level of these hormones. The drug is currently only approved for patients who have already undergone hormone therapy or surgery. “According to the study data, there is a good improvement in symptoms in these previously treated patients,” said Thomas Kolben. “The new preparation thus expands our options once again.”
However, all hormone therapies also have side effects. “Loss of libido and depressive moods are the most frequently mentioned in consultations and studies,” said Stefanie Burghaus. “It’s all the better that we now have various preparations available that we can try out one after the other.” However, each should be taken for at least three months to really notice its effects.
Even women who do not experience any side effects during hormone therapy often have reservations about the hormones. Some also fear that the hormones and contraceptive pills could cause infertility. Clinic boss Sven Mahner clearly opposed this during the SZ Health Forum. “The pill is extremely effective as a contraceptive,” he said, “but if you stop taking it, there are no negative consequences for fertility.”
Only hormones and surgery can effectively stop the progression of endometriosis
Whether a woman with endometriosis takes the hormones is ultimately her decision, emphasized Thomas Kolben. However, she must be aware that if she decides against this main path of therapy, she will be turning down the chance to fundamentally improve her illness. “You can try to get the symptoms under control using alternative methods,” says Kolben, “but you can only prevent endometriosis from progressing and growing with hormones and surgery.”
In addition to hormone therapy, complementary procedures could provide relief, said the gynecologist. Patients repeatedly reported good experiences with physiotherapy, osteopathy or acupuncture. Kolben also recommended paying attention to diet. Many women with endometriosis complain about symptoms in the intestines – from irregular stools to bloating, the “endobelly”. “We don’t have a patent recipe,” says Kolben, “but there is evidence that a vegetarian or vegan diet with lots of green vegetables and avoiding spicy foods can lead to an improvement in symptoms.”
If the pain cannot be relieved despite various approaches, surgery may be considered. However, it is the last choice, because the removal of the tissue from the abdominal cavity is always associated with a certain risk to fertility – especially if foci have to be removed from unfavorable places, for example in the area of the fallopian tubes.
How successful the treatment of endometriosis is ultimately depends on many factors – especially on how extensive the disease is when therapy begins. “But you also have to be aware that endometriosis is a chronic disease,” said Stefanie Burghaus. “We therefore recommend that every patient continue or start hormonal therapy after the operation. Those affected often have the idea that they will be free of pain after the operation, but unfortunately that is often not the case in practice.” Pain therapy by specialized doctors should therefore not be neglected.
Those affected can have hopes for menopause. “Many patients have significantly fewer symptoms after the menopause,” said Stefanie Burghaus, “but still a low single-digit percentage.” These women often had extensive endometriosis with adhesions, numerous operations and chronic disease; they often received their diagnosis late. As a result, such patients often suffer from mental illnesses such as depression or anxiety disorders.
“No illness of the body can ignore the soul in the long term,” said Thomas Kolben. “If you are confronted with the symptoms again and again, you develop a basic tension in the body; this increases the pain.” This creates a vicious circle that contributes to chronicity, in which patients often no longer only experience pain during their menstruation, but almost constantly – and beyond menopause. “It is important to break out of this vicious circle,” says Kolben, for example through relaxation exercises and a holistic view of the disease. Women can also learn this in rehab. Because very few people know that they even have a right to it.