Endometriosis: Pain and Stigma – A Call for Education!

Endometriosis: Pain and Stigma – A Call for Education!

Endometriosis is a common but often misunderstood gynecological disease that affects many women worldwide. In Germany, between 10 and 15 percent of women of childbearing age, i.e. several million patients, are affected. This condition occurs when tissue similar to the lining of the uterus grows outside the uterus. The consequences are not only severe pain, but also an increased risk of infertility. How uni-wh.de According to reports, it takes an average of ten years before a diagnosis is made, with many women complaining that their complaints are not taken seriously.

The shortcomings in the diagnosis and treatment of endometriosis are attracting increasing attention. Till Neugebauer from the Chair of Health Services Research at the University of Witten/Herdecke highlights how social media helps to reduce awareness of this disease. The project “Diversity-sensitive care for patients with endometriosis” (DivEndo), initiated by the university, aims to improve the research and care landscape for those affected. A key outcome of the project was the analysis of over 7,000 comments from social media, which provided a deep understanding of patients' experiences.

Research initiatives and future steps

The project identified four key themes that illustrate the experiences and needs of women with endometriosis. The research team plans to submit an application to the Innovation Fund in the fall to develop a digital offering. This offer is intended to raise awareness of the disease and promote communication between patients and medical professionals. One focus will be on strengthening the self-efficacy of those affected and giving them the opportunity to actively participate in their care planning.

Some of the challenges encountered in treatment primarily affect marginalized groups. Research shows that racialized patients have higher rates of open abdominal surgery compared to minimally invasive procedures. These circumstances often result in major complications, highlighting the need for quality care. Loud pmc.ncbi.nlm.nih.gov Additionally, 65% of menstruating Indigenous people have difficulty receiving adequate pain treatment, compounded by barriers such as affordability and availability.

Practical experiences and reports from those affected

Reports from different women impressively show how different the effects of the disease can be. For example, **Anita Nneka Jones**, 30 years old from the UK, reports her misdiagnosis of appendicitis at the age of 14. Finally, at age 28, I was diagnosed with stage 2 endometriosis. She emphasizes how important it is to educate people about the disease.

**Leah**, 45 years old from the Philippines, shares her stage 4 diagnosis at 37, emphasizing that period pain is not normal and pregnancy cannot cure the disease. **Emilia Victoria**, 26 years old from Australia, describes how the condition affected her pregnancy after suffering pain for over 11 years. Such personal accounts highlight not only the scope of the disease, but also the need to end the stigma often associated with endometriosis.

In their stories, the women affected show a tireless determination to make their voices heard. **Wendy Laidlaw**, who was diagnosed when she was 11 or 12, talks about her recovery through nutritional therapy and psychotherapy. Your example is a shining example of the need for a comprehensive and holistic approach to the treatment of endometriosis. While many other women hope for a quick and correct diagnosis, the disease remains an often ignored topic. How glamour.de notes, Endometriosis Awareness Month takes place annually in March and is intended to raise awareness of this serious disease.