Endometriosis – although almost every 10th woman in Germany and about 200 million worldwide are affected by this extremely painful abdominal disease, very few people know about it, often not even those affected themselves. How is it possible that not everyone has at least heard of this disease or knows someone who suffers from it? March has been officially designated as Endometriosis Awareness Month to reach a wider audience to increase awareness of endometriosis. We also want to play a part in raising awareness and show our support for women with endometriosis, as it is also close to our hearts to bring more awareness to this condition. Let’s finally give women with endometriosis a voice!
What is endometriosis?
Endometriosis is a very common, benign, but often very painful chronic disease in women in which the lining of the uterus, or endometrium, occurs outside the uterine cavity. Endometriosis lesions usually occur in the lower abdomen or pelvic cavity, often affecting the ovaries. However, they can also occur in the fallopian tubes, intestines, bladder or peritoneum. In principle, the endometrium can grow anywhere in the body. Endometriosis can be a cause of infertility in women. Since the exact cause for the development of endometriosis has not yet been clarified, there is no possibility of causal prevention or even cure to date.
What are the symptoms of endometriosis?
Leading symptoms of endometriosis are cramp-like pain associated with the menstrual cycle, ranging from increasing intensity to fainting, as well as chronic abdominal and back pain, nausea, dizziness, cramps in the bowel, chronic fatigue and exhaustion. The effects of endometriosis are individual and varied for each affected person: from a pain-related inability to work or unfulfilled desire to have children in young women to menopausal symptoms. Pain during sexual intercourse, painful or difficult bowel movements, and pain during urination are described. Menstruation may be increased and prolonged. According to the results of a British study, patients are unable to work for an average of 45 days a year due to significant symptoms! However, women with endometriosis have significantly reduced productivity at work due to pain, even independent of the loss of work, and are also severely impaired in everyday life. Chronic pain can cause sleep problems, anxiety, depression, irritability, withdrawal and impaired thinking, among other things – so endometriosis has not only physical, but also psychological and social consequences. In some patients, endometriosis causes little or no discomfort and therefore often goes undetected.
Why is endometriosis often diagnosed very late?
On average, 3 to 11 years (!) pass between the first symptoms and the diagnosis. During this time, about 50% of affected women have seen five or more doctors! The younger the patients in whom the first signs appear, the more time passes before endometriosis is diagnosed.
Reasons for delayed diagnosis are nonspecific symptoms like menstrual pain, which are sometimes considered “normal” by girls, women, physicians, and the general public. As a result, complaints are reported with a delay and sometimes misinterpreted by physicians, with a variety of differential diagnoses also being considered as possible causes of complaints. This is precisely why educational work is urgently needed. In addition, there is still no therapy apart from hormone treatments and operations, which by no means help every woman.
“Often, surgery is performed too early”
Gynecologist and reproductive physician Prof. Dr. Henry Alexander says, “Doctors and patients often see surgical removal of endometriosis lesions as the only option. However, my advice is more to be cautious about surgery.” Surgeries, he says, are often too aggressive and remove too much tissue, including healthy tissue, in order to delay a flare-up of endometriosis as long as possible. “Especially for patients who want to have children, surgery is often counterproductive. With each operation, for example on the ovary, the woman loses more and more ovarian tissue and therefore potential tissue to make follicles. We harm our patient if we operate too early.” In addition, the risk of complications, such as postoperative bleeding and adhesions, is very high, the expert said. He advises infertility patients who are not impaired to first closely monitor their cycle for 3-4 months, e.g. with OvulaRing to get pregnant naturally. In a later step, the fertility center could decide on surgery together with the patient, he said.
Creating awareness of endometriosis
The disease endometriosis has been around for decades. Nevertheless, endometriosis and its consequences tend to be trivialized. They are not present in public and are far too little known, even among doctors. Affected girls and women would like to see a faster and simpler way of diagnosis. Sylvia Mechsner, head of the Endometriosis Center at Berlin’s Charité Hospital: “If the disease also affected men, we’d have a solution by now!”
Every year in March, numerous events are held around the world on the topic of endometriosis. One of them is the “EndoMarch”: a worldwide campaign in which women take to the streets to raise more awareness about endometriosis, adenomyosis, fibroids and other related chronic lower abdominal pain in women (www.endomarch.org.) The foundation for this was laid with a campaign in the USA in March 2014. Various campaigns on endometriosis are also taking place this month in several German states. The goal is to finally give women with endometriosis a voice and to draw attention to the difficulties in diagnosis and therapy. This year, the worldwide EndoMarch Day is planned for March 28, 2020.
What are sufferers calling for?
The reality looks bleak: There is a lack of research, professional competence on the part of the medical profession, early diagnosis including simplified testing methods, individual therapy concepts and aftercare, and unbureaucratic access to outpatient and inpatient rehabilitation measures. Those affected are also calling for increased educational work in doctors’ offices, clinics and the public, promotion of nationwide and comprehensive contact points for those affected, promotion of therapies for unintentionally childless couples, promotion of outpatient therapy programs and improved aftercare following operations, and promotion of programs for reintegration into work and careers.
On social networks, more and more affected women are speaking out every day, including public figures, to draw attention to the disease and their personal stories of suffering (e.g. under #endopower or #endosister). Others seek answers to questions, as well as support and compassion from an ever-growing community that knows what it’s talking about. Along with self-help groups, this too has become a new and important refuge for exchanging ideas with one another as well as a mouthpiece for the public. However, a joint effort of scientists, physicians and the broader society is needed to further research this disease and, above all, to finally take it seriously!
Here you can find information and help
Endometriose-Vereinigung Deutschland e.V. https://www.endometriose-vereinigung.de/home.html
Veranstaltungskalender Endometriose Vereiningung https://www.endometriose-vereinigung.de/veranstaltungen.html
Netzwerk Endometriose https://www.netzwerk-endometriose.de/netzwerk/
Charité Berlin – Endometriosezentrum am Campus Virchow Klinikum mit Endometriose-Sprechstunde