Endometriosis – Addressing the Challenges of Diagnosis and Treatment for Invisible Suffering
by Jessica Kaufmann
Imagine suffering from unbearable, recurring monthly pain for years without a clear diagnosis or explanation. For approximately 190 million women, this agonizing reality is a daily struggle due to the disease endometriosis. Endometriosis is a chronic condition where endometrial-like tissue grows outside the uterus, causing severe physical and emotional impacts. Affected individuals suffer from severe menstrual pain, infertility, and other symptoms that significantly impair daily life. Diagnosing endometriosis is particularly challenging due to nonspecific symptoms and overlap with other conditions. The time to a correct diagnosis typically ranges from 7 to 10 years, significantly prolonging the suffering of those affected.
Given these extensive complaints, it is crucial to effectively communicate about endometriosis to raise awareness and understanding.
Understanding Endometriosis
Endometriosis is a benign, chronically progressive disease where endometrial-like tissue grows outside the uterus and behaves similarly. This tissue thickens, breaks down, and bleeds with each menstrual cycle. Unlike the endometrial lining within the uterus, the tissue involved in endometriosis cannot exit the body. This leads to entrapment, which irritates surrounding tissue and ultimately causes the formation of scar tissue and adhesions. This tissue can settle on the ovaries, in the abdominal and pelvic cavity, on the intestines, or the peritoneum, and theoretically at any location in the body, even outside the abdominal cavity.
Image 1: Endometriosis lesions and where they can grow Image source: https://www.endometriose-vereinigung.de/wp-content/uploads/2023/08/8-2023_Anatomi
Although the symptoms are invisible, endometriosis triggers a variety of complaints that can significantly impair daily life. These include severe pain, infertility, and numerous other symptoms. Endometriosis is the second most common gynecological condition and can affect anyone with a uterus.
Unclear Causes of Endometriosis
The exact cause of endometriosis is still unclear, with several theories under discussion.
The first theory suggests that endometriosis cells form directly in places outside the uterus. It has been proven that peritoneal cells can transform into endometrial cells. This process is known as metaplasia. Such cell transformations are observed during the development of sexual organs in embryos.
Another theory posits that endometrial cells are transported from the uterus to other parts of the body. This could happen through the retrograde flow of menstrual blood via lymphatic and blood vessels, allowing these cells to reach almost any part of the body. However, this assumption is challenged by the observation that endometriosis cells differ significantly from normal endometrial tissue and that menstrual blood can flow backward even in women without endometriosis.
Symptoms and Prevalence
The symptoms of endometriosis can manifest in various ways, and the severity varies. Possible symptoms include pelvic pain, often linked to menstruation but can also occur independently, and be more severe than typical menstrual cramps (dysmenorrhea). Painful menstrual periods with lower abdominal cramps and lower back pain (dyspareunia), as well as pain during or after sexual intercourse, are common. Pain during bowel movements or urination, mostly during menstruation, can also be noted. Other symptoms include excessive bleeding, heavy periods, or bleeding between periods, infertility (often first diagnosed during fertility treatments), and fatigue, diarrhea, constipation, bloating, and nausea, particularly during menstrual periods. Besides physical impacts, there can be emotional disturbances such as chronic stress, depression, body image issues, and mood swings. Socially, pain and fatigue can affect work performance and productivity, strain intimate relationships, and lead to social isolation. Additionally, the lack of awareness and understanding of endometriosis contributes to stigmatization and misconceptions.
The prevalence of endometriosis is about 10% among women and girls of reproductive age worldwide, amounting to around 190 million affected individuals. The actual prevalence is likely higher, as the time from symptom onset to diagnosis can take up to 10 years. The disease can begin in adolescence but is often diagnosed later. Up to 20% of infertility cases are linked to endometriosis. The risk of developing endometriosis is five to seven times higher for women with first-degree relatives (mother, sister) who also have the disease.
The Path to Diagnosis and What Comes Next?
Diagnosis is challenging due to nonspecific symptoms, lack of awareness, and invasive diagnostic procedures, leading to diagnostic delays. In 2022, a non-invasive test called Endotest® Diagnostic was introduced. While validated and recognized, like most newly developed tests, it is categorized as an individual health service (IGeL), meaning the costs (800 €) must be borne by the patients themselves.
Due to the invisible symptoms, it is difficult to make a diagnosis, but if many of the symptoms apply, it makes sense to consult a gynaecologist. The first step is a medical history interview, during which the medical history, current symptoms, family history and menstrual cycle are asked. This is followed by a physical examination, during which the doctor palpates the pelvic area to detect any abnormalities or painful areas. Imaging procedures such as ultrasound or magnetic resonance imaging are usually also carried out.
Based on the consultation and examination, the gynaecologist must decide whether a laparoscopy is an option and inform the patient accordingly. A definitive diagnosis cannot be made after the examination. Surgical intervention is required to determine whether endometriosis is present, unless the endotest is carried out.
Laparoscopy is a surgical procedure under general anaesthetic in which the abdominal cavity is opened through small incisions. With the help of a camera, the doctor can see into the abdominal cavity and recognise endometriosis lesions. To confirm the diagnosis, tissue samples are taken and examined histologically.
After the histological examination and confirmation of the diagnosis, the patient is informed about the treatment.
Endometriosis is a chronic condition that cannot be completely cured. Therefore, treatment focuses on alleviating symptoms and improving the quality of life for those affected. Treatment options include medication, surgery, or alternative and complementary therapies. Medication includes painkillers and hormone therapies to relieve pain. Surgical procedures involve removing endometrial tissue, cysts, and adhesions. Physiotherapy and psychotherapy may be used alternatively or in addition. However, surgery does not guarantee that new endometrial lesions will not develop.
Conclusion: The Need for Awareness
Currently, efforts are being made to raise awareness of endometriosis through various measures. Public awareness campaigns like Endometriosis Awareness Month (March), social media campaigns under hashtags like #EndoWarrior, and the involvement of prominent personalities sharing their experiences help increase visibility. Patient organizations and support groups provide assistance and information, while scientific conferences and research deepen understanding. Digital tools like the Endo-App offer affected individuals the ability to track symptoms, access information, and connect with others, supporting self-management and disease management.
Nevertheless, there is room for improvement. Increased use of digital media, targeted educational programs in schools and workplaces, and enhanced political lobbying could amplify these efforts. Additionally, more involvement of healthcare providers in education and better financial support for research are crucial.
It is fundamentally important to educate about invisible and new diseases. Comprehensive education raises awareness, promotes early diagnosis and treatment, and reduces stigmatization. Ensuring the necessary support and recognition for affected individuals can only be achieved through continuous information and sensitization efforts.
Sources
Lamceva, Jelizaveta; Uljanovs, Romans; Strumfa, Ilze (2023). The Main Theories on the Pathogenesis of Endometriosis. International Journal of Molecular Sciences, 24(5), 42–54.
Meulemann, Christel et al. (2009). High prevalence of endometriosis in infertile women with normal ovulation and normospermic partners. Fertility and Sterility 92(1), 68–74.
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