Endometriosis: An invisible disease!

Endo – what? Endometriosis is a chronic inflammatory and the second most common gynecological disease in women. Up to 40,000 new cases are recorded each year and about one in ten women is affected. And yet, shockingly, endometriosis is still fairly unknown, initially raises many question marks among newly diagnosed patients, and has so far received too little attention from society. Those affected often encounter a lack of understanding, as the disease is usually not visible to the outside world.

Uterus-like tissue is located outside the uterus and forms so-called ‘endometriosis foci’. These fuse to various organs, such as the uterus, pelvis, bladder, intestines, diaphragm, ovaries and, in rare cases, the lungs, liver or even the brain, with the tissue there. This often causes adhesions and inflammation, which are often accompanied by pain. The endometriosis foci react in accordance with the regular monthly cycle at the beginning of the cycle, i.e. menstruation. However, the blood remains in the body and can cause the development of the so-called ‘chocolate cysts’. Endometriosis is also called a ‘medical chameleon’. It often manifests itself with a wide variety of symptoms and diagnosis may be difficult. In particular, after a few uncertain years without a diagnosis, the first symptoms may not be clearly identified. Often the cause of the pain is then no longer sought in the starting point of the abdomen and thus treated by a gynecologist, but by other specialized physicians, such as orthopedic practitioners because of the severe back pain. Not infrequently, a long journey through a wide variety of doctors follows without finding the cause. On average, it takes six to ten years to finally get the diagnosis of endometriosis. For many women, the final diagnosis is a relief after years of uncertainty. Nevertheless, it is also possible that affected women do not suffer from pain and endometriosis is not diagnosed at all or is diagnosed by chance. There is no measurement tool for endometriosis and in the first step pain, especially severe menstrual pain, is often the only indication. The occurrence of the pain, certainly radiating beyond the abdomen into other regions of the body or even into the entire body, is dependent on and independent of the menstrual cycle. Affected women often describe abdominal and back pain before and during menstruation, which often radiates into the legs. In addition, irregular and heavy menstrual pain and bleeding may occur, as well as pain during or after sex, during gynecological examinations, in the bowel or bladder. Associated symptoms can include fatigue, tiredness, headache, dizziness and depression in more than half of women affected by endometriosis. As a result, everyday life and professional life are greatly affected and the lives of affected women often become unpredictable. Many appointments, dates and events have to be canceled due to the effect of almost unbearable symptoms. In order to diagnose endometriosis, a detailed examination should first be performed by the gynecologist or, alternatively, directly by certified endometriosis practices, clinics or centers. For this purpose, a pain diary is useful in the first step, in order to record observations of the times and situations in which the pain occurs, and then to investigate a connection with the menstrual cycle. If endometriosis is suspected, various follow-up steps are useful. After an anamnesis interview, gynecological palpation and an ultrasound or MRI examination are performed. However, the only reliable diagnosis is a surgical procedure in the form of laparoscopy.

In addition to the frequent leading symptoms, endometriosis is afflicted by various concomitant diseases. These include intestinal diseases, allergies, intolerances and food intolerances, effects on the heart and musculoskeletal system or psychological changes and effects on sexuality.

Even if you have been diagnosed with endometriosis there is the possibility of an uncomplicated and problem-free pregnancy. However, endometriosis can lead to infertility. Infertility caused by endometriosis can result from adhesions, adhesions, large endometriosis cysts or tubal occlusions. However, even in these cases, there are hopeful approaches. Pregnancy and endometriosis are not mutually exclusive. In addition to the possibilities of hormonal or surgical therapies, there are further treatment options in fertility centers within the framework of assisted reproduction. However, it is also a fact that endometriosis can lead to more complications during pregnancy as, for example, the risk of ectopic pregnancies or miscarriages is increased. It is therefore very important to attend to regular check-ups with a gynecologist or a midwife.

Even though endometriosis is not curable yet, there are many treatment options that can alleviate the suffering. However, it is important to understand that due to the very different manifestations and symptoms of endometriosis, no universal therapy recommendation or approach can be given. Each affected person sets different priorities, goals and sees different options for themselves as feasible and implementable. Therefore, each affected person should find their own, very individual therapy path for dealing with endometriosis, which in many cases consists of trial and error, experimentation and research. First of all, medical treatment is very important, and here too the choice depends on the patient’s own symptoms and ideas about therapy. To find experts specialized in endometriosis, the Endometriosis Association Germany, the Endometriosis Research Foundation or the European Endometriosis League are good first points of contact. These self-help and medical organizations provide, among other things, a lot of background information free of charge. In addition, there are various self-help groups, counseling opportunities and offices, as well as overviews of specialists and about 100 medical endometriosis centers in Germany alone. In the latter, specialists with different backgrounds and fields meet and, in particular, through detailed counseling and medical discussions, it is possible to discuss the individual therapy ideas and derive appropriate measures from which an explicitly tailored interdisciplinary treatment concept can be developed. In most cases, endometriosis treatment is not only carried out by the gynecologist but many different specialties are involved. There are various therapeutic treatment approaches for endometriosis. These include, for example, surgical therapy through laparoscopy, in which endometriosis can be detected through small spots in the abdomen and foci, cysts, adhesions and adhesions can be sclerosed and removed directly in the best possible way. It is also possible to treat endometriosis and pain with pain medication in the form of pain therapy. Another option is to take hormones and progestins, which prevent the build-up of mucous membrane and prevent or suppress bleeding at the beginning of the cycle. It is unknown to many affected women that with an endometriosis diagnosis it is possible to apply for rehabilitation. For this purpose, certain applications must be filled out and accompanied by a letter from a physician. In the individual rehab clinics, there are similar treatment offers as well as therapy concepts, such as physiotherapy, occupational therapy and psychological therapy measures, intensive gynecological and specialist care, specific nutritional counseling for endometriosis and also relaxation therapies. The overall goal of an endometriosis patient’s rehab stay is to stabilize the body and the soul by promoting quality of life. It is possible to request information flyers on the individual rehabilitation clinics specializing in endometriosis and certified by the Endometriosis Association Germany. In addition, there are also various complementary treatment options for endometriosis, in which the primary goal is to (re)establish the psychological and physical well-being of the patient and to alleviate the symptoms. Many patients report positive results from exercise, mindfulness exercises, and stress reduction through targeted relaxation, such as autogenic training or progressive muscle relaxation. There are also many different forms of yoga. Yin yoga in particular has a particularly calming and soothing effect on pain. However, caution is advised with hormone yoga – this form of yoga is controversial in endometriosis. Massages or manual therapy, physiotherapy or pelvic floor training can be used as part of physiotherapy to relieve tension in the muscles and adhesions in the fasciae, so that the high levels of tension in the pelvic floor in endometriosis, in particular, are reduced. Through connective tissue as well as foot reflex zone massages, among other things, the intestines are soothed, digestion is stimulated and flatulence is relieved. With osteopaths, naturopathic practitioners, as well as therapies in the context of traditional Chinese medicine (TCM), are offered many further therapy possibilities. In naturopathy, many medicinal plants can be found which have a positive effect on endometriosis. Among the most common are a tea combination of raspberry leaves and lady’s mantle, which can have a healing and pain-relieving effect, especially during menstruation.

Although it is unlikely and not proven that endometriosis can be cured by diet alone, many women with endometriosis suffer from allergies, intolerances and food intolerances, which can play a role in the severity of endometriosis symptoms. Here, too, each affected person is different and it is important to try, test and observe what effects different foods have on the body and find out what is good for you as an individual. In any case, it makes sense to adjust your diet to the specific needs of endometriosis, because in this way symptoms can be alleviated. For example, there are foods, such as red meat, too much sugar or, in some cases, wheat products, which increase the inflammatory parameters in our body and, since endometriosis is an inflammatory disease, it makes sense to avoid these foods. On the other hand, there are also foods that should be consumed, as they support digestion, the immune system and also overall well-being, such as ginger, vegetables or omega-3 fatty acids. Overall, it is important with all hormonal issues to follow a balanced, cycle-adapted diet as well as stay hydrated – especially during menstruation.

At the current time, endometriosis is not yet established in our society and many do not know how to deal with this disease and as a result, many sufferers encounter a lack of understanding. This is despite the fact that the percentage of women of reproductive age who suffer from endometriosis is approximately 5 to 15%. It is very important that endometriosis-typical pain and complaints are taken seriously and examined, especially at a young age, so that the quality of life, as well as the fertility of these young women, can subsequently be accompanied, if necessary, by adequate pain therapy, examination and counseling measures. A New Zealand study (Menstrual Health and Endometriosis Education Programs) found that educating schoolgirls at a young age leads to a shortening of the diagnosis from the onset of first possible symptoms. Recently, France announced a national plan against endometriosis, and French President Macron advocated for more money to be spent on research, education and treatment of endometriosis and wanted to call for a national strategy against the chronic disease.

Eva has a background as a competitive ballet and tennis athlete, is an internationally certified yoga and meditation teacher, and as an aspiring yoga therapist, loves the interplay of movement, body, heart and mind. Through yoga she wants to show individual practices and ways to be aware of the breath and the body and to connect them in a mindful and healthy way and to let breath and movement flow in harmony. In addition, Eva suffers from endometriosis herself and wants to consciously raise awareness for this important topic. 

Sources:

https://www.endometriose-vereinigung.de

https://www.gbe-bund.de/gbe/

https://www.endometriozisdernegi.org/konu/dosyalar/pdf/makale_ozetleri/Mart2017/makale3.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4999325/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941592/