Give women with endometriosis a voice!
Endometriosis—although nearly one in ten women in Germany and about 200 million worldwide are affected by this extremely painful pelvic condition, very few people are...
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Anne Alexander
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Endometriosis—although nearly one in ten women in Germany and about 200 million worldwide are affected by this extremely painful pelvic condition, very few people are familiar with it, often not even the women affected themselves. How is it possible that not everyone has at least heard of this condition or knows someone who suffers from it? March has been officially designated Endometriosis Awareness Month to reach a wider audience and thus increase awareness of endometriosis. We, too, want to contribute to raising awareness and show our support for women with endometriosis, because raising awareness of this condition is a matter close to our hearts as well. Let’s finally give women with endometriosis a voice!
What is endometriosis?
Endometriosis is a very common, benign, yet often extremely painful chronic condition in women in which the lining of the uterus—the endometrium—grows outside the uterine cavity. Endometriotic lesions most commonly occur in the lower abdomen or pelvic area, and the ovaries are frequently affected. However, they can also occur on the fallopian tubes, the intestines, the bladder, or the peritoneum. In principle, the endometrium can grow anywhere in the body. Endometriosis can be a cause of infertility in women. Since the exact cause of endometriosis has not yet been determined, there is currently no way to prevent it or even cure it.
What symptoms does endometriosis cause?
The main symptoms of endometriosis include cramp-like pain associated with the menstrual cycle, ranging in intensity from mild to severe enough to cause fainting, as well as chronic abdominal and back pain, nausea, dizziness, intestinal cramps, chronic tiredness, exhaustion, and fatigue. The effects of endometriosis vary widely from person to person: ranging from pain-related inability to work or the inability of young women to conceive to symptoms during menopause. Patients report pain during sexual intercourse, painful or difficult bowel movements, and pain during urination. Menstrual bleeding may be heavier and last longer. According to the results of a British study, patients are unable to work an average of 45 days a year due to significant symptoms! However, women with endometriosis experience significantly reduced productivity in their professional lives due to pain—even when not factoring in lost workdays—and are also severely impaired in their daily lives. Chronic pain can cause, among other things, sleep problems, anxiety, depression, irritability, withdrawal, and cognitive impairments—thus, endometriosis has not only physical but also psychological and social consequences. In some patients, endometriosis causes no or only minor symptoms and therefore often goes undetected.
Why is endometriosis often diagnosed so late?
On average, 3 to 11 years (!) pass between the onset of symptoms and diagnosis. During this time, about 50% of affected women have seen five or more doctors! The younger the patients are when the first symptoms appear, the longer it takes for endometriosis to be diagnosed.
The reasons for delayed diagnosis include nonspecific symptoms that, like menstrual cramps, are sometimes viewed as “normal” by girls, women, doctors, and the general public. As a result, symptoms are reported late and are sometimes misinterpreted by doctors, with a wide range of differential diagnoses also being considered as possible causes of the symptoms. This is precisely why public education is urgently needed. Furthermore, aside from hormone treatments and surgeries—which by no means help every woman—there is currently no other available therapy.
“Surgery is often performed too early”
Gynecologist and reproductive medicine specialist Prof. Dr. Henry Alexander says: “Doctors and patients often view the surgical removal of endometriosis lesions as the only option. However, I tend to advise against rushing into surgery.” The surgeries are often too aggressive and remove too much tissue—including healthy tissue—in an effort to delay a recurrence of endometriosis for as long as possible. “Especially for patients hoping to conceive, surgery is often counterproductive. With every surgery, e.g., on the ovary, the woman loses more and more ovarian tissue and thus also potential tissue for producing follicles. We harm our patient if we operate too early.” Furthermore, the risk of complications, such as postoperative bleeding and adhesions, is very high, according to the expert. He advises patients seeking to conceive who are not otherwise impaired to first closely monitor their cycle for 3–4 months, e.g., using the OvulaRing, in order to conceive naturally. At a later stage, the fertility center can decide on surgery together with the patient.
Raising awareness about endometriosis
Endometriosis has been around for decades. Yet the condition and its consequences are often downplayed; it receives little public attention and is far too little known, even among doctors. As a result, many women living with the condition hope, above all, for a faster and simpler way to confirm the diagnosis in the future. Sylvia Mechsner, director of the Endometriosis Center at Berlin’s Charité: “If the disease also affected men, we would have found a solution long ago!”
Every March, numerous events focused on endometriosis take place around the world. One of these is “EndoMarch”: a global campaign in which women take to the streets to raise 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 U.S. in March 2014. In Germany, too, various events on the topic of endometriosis are taking place this month in several states. The goal is to finally give women with endometriosis a voice and to draw attention to the difficulties in diagnosis and treatment. This year, the global EndoMarch Day is scheduled for March 28, 2020.
What are those affected calling for?
The reality is bleak: there is a lack of research, professional expertise among the medical community, early diagnosis (including simplified testing methods), individualized treatment plans and follow-up care, as well as unobstructed access to outpatient and inpatient rehabilitation services. Those affected are also calling for increased educational efforts in doctors’ offices, clinics, and among the general public; the promotion of nationwide and comprehensive support centers for those affected; the promotion of therapies for couples who are involuntarily childless; the promotion of outpatient therapy programs and improved post-operative care; and the promotion of programs for reintegration into work and professional life.
Every day, more and more women affected by the condition are speaking out on social media, including public figures, to raise awareness about the disease and share their personal stories (e.g., under #endopower or #endosister). Others turn to these platforms for answers to their questions, as well as for support and empathy from an ever-growing community that knows exactly what they’re talking about. Alongside support groups, this has also become a new and important refuge for mutual exchange as well as a voice for the public. However, it requires a joint effort by scientists, doctors, and society at large to further research this disease and, above all, to finally take it seriously!
Here you’ll find information and help:
Latest article on tagesschau.de: tagesschau.de/knowledge/health/endometriosis
Endometriosis Association of Germany, Inc. https://www.endometriose-vereinigung.de
Event Calendar: Endometriosis Association https://www.endometriose-vereinigung.de/veranstaltungen
Endometriosis Network https://www.netzwerk-endometriose.de/netzwerk/
Charité Berlin – Endometriosis Center at the Virchow Clinic Campus with an endometriosis clinic
