"I think to myself 'why now?'" - a qualitative study about endometriosis and pain in Austria.

BACKGROUND: Endometriosis is a chronic, benign, and oestrogen-dependent condition and about 10-15% of all women of reproductive age are affected by endometriosis worldwide. It is not curable and pain is one of the most common symptoms of endometriosis and leads to low quality of life in affected women. To our knowledge, in German-speaking countries, no studies with qualitative methods approaches are available concerning women who suffer from pain caused by endometriosis and possible associated coping strategies. Our study aims to familiarise ourselves with the individual pain experience of selected women who suffer from endometriosis in Austria and their coping strategies. METHODS: A qualitative study design was based on problem-centred interviews for data collection and qualitative content analysis for data analysis. The research participants were women aged between 18 and 55 diagnosed with endometriosis and living in Austria. The interview period was from 27 February to 26 March 2019 and interviews lasted between 50 and 75 min. RESULTS: Eight categories were formulated, of which category 3 (thoughts and feelings regarding endometriosis and pain - 'why?'), category 5 (effects and changes caused by endometriosis and pain - 'quality of life'), category 7 (taboos - 'don`t talk about it'), and category 8 (talking about it - 'contact with others in the same position') were relevant for this article. The remaining four categories [1-4] have already been published elsewhere. CONCLUSION: Our data show that the social environment plays a fundamental role in coping strategies concerning pain caused by endometriosis. Women in our study reported that exchange with peers offers support. This opens a door for information events, patient organizations like support groups, and the inclusion of these in the supporting system. Involving occupational medicine and workplace health promotion departments in companies should be further goals to support affected women.

Does the Use of the "Proseek® Multiplex Inflammation I Panel" Demonstrate a Difference in Local and Systemic Immune Responses in Endometriosis Patients with or without Deep-Infiltrating Lesions?

Endometriotic lesions are able to infiltrate surrounding tissue. This is made possible partly by an altered local and systemic immune response that helps achieve neoangiogenesis, cell proliferation and immune escape. Deep-infiltrating endometriosis (DIE) differs from other subtypes through the invasion of its lesions over 5 mm into affected tissue. Despite the invasive nature of these lesions and the wider range of symptoms they can trigger, DIE is described as a stable disease. This elicits the need for a better understanding of the underlying pathogenesis. We used the "Proseek® Multiplex Inflammation I Panel" in order to simultaneously detect 92 inflammatory proteins in plasma and peritoneal fluid (PF) of controls and patients with endometriosis, as well as in particular patients with DIE, in order to gain a better insight into the systemically and locally involved immune response. Extracellular newly identified receptor for advanced gycation end-products binding protein (EN-RAGE), C-C motif Chemokine ligand 23 (CCL23), Eukaryotic translation initiation factor 4-binding protein 1 (4E-BP1) and human glial cell-line derived neurotrophic factor (hGDNF) were significantly increased in plasma of endometriosis patients compared to controls, whereas Hepatocyte Growth factor (HGF) and TNF-related apoptosis inducing ligand (TRAIL) were decreased. In PF of endometriosis patients, we found Interleukin 18 (IL-18) to be decreased, yet Interleukin 8 (IL-8) and Interleukin 6 (IL-6) to be increased. TNF-related activation-induced cytokine (TRANCE) and C-C motif Chemokine ligand 11 (CCL11) were significantly decreased in plasma, whereas C-C motif Chemokine ligand 23 (CCL23), Stem Cell Factor (SCF) and C-X-C motif chemokine 5 (CXCL5) were significantly increased in PF of patients with DIE compared to endometriosis patients without DIE. Although DIE lesions are characterized by increased angiogenetic and pro-inflammatory properties, our current study seems to support the theory that the systemic immune system does not play a major role in the pathogenesis of these lesions.

The rs2046210 Polymorphism Is Associated with Endometriosis Risk and Elevated Estrogen Receptor 1 Expression in the Eutopic Endometrium of Women with the Disease.

In this focused genetic case-control study, we analyzed two functional single-nucleotide variants (SNVs) associated with breast cancer risk (rs2046210, rs9383590) and one risk SNV for an implantation defect and infertility (rs9340799) for their association with endometriosis susceptibility, progression and ESR1 gene regulation in endometriosis patients. The rs2046210, rs9383590 and rs9340799 SNVs were genotyped in 153 endometriosis patients and 87 control subjects with Caucasian ancestry. We analyzed the association of all SNVs with endometriosis susceptibility in all patients and in subgroups and assessed the concordance between the SNVs. Quantitative reverse transcription PCR was used to determine ESR1 gene expression in the eutopic endometrial tissue of the controls and endometriosis patients. The heterozygous rs2046210 GA genotype was associated with significantly increased endometriosis risk, particularly in younger, leaner and infertile women and with an increased ESR1 gene expression in the eutopic endometrium of these patients, compared to controls. The minor AA genotype of rs2046210 was identified as a potential risk factor for endometriosis progression in women with mild endometriosis. The results from this analysis indicate that rs2046210 may be a functional genetic variant associated with endometriosis development and progression.

Long-Term Follow-Up of the Quality of Life of Endometriosis Patients after Surgery: A Comparative Study.

Background/Objectives: This study investigated the long-term effects of the surgical removal of endometriotic lesions on quality of life in endometriosis patients. A sub-analysis explored different subtypes of endometriosis, hormonal influence, and the need for reoperation. Methods: The study was conducted at the Certified Endometriosis Center of the Medical University of Vienna. Included in the study were patients who had undergone the complete surgical removal of endometriotic lesions between 2014 and 2018. Patients were asked to complete the Endometriosis Health Profile-30 preoperatively, at the short-term follow-up (six to ten weeks postoperatively), and at the long-term follow-up (median of 48 months postoperatively). Results: A total of 87 patients completed the Endometriosis Health Profile-30 at the three time points. At the long-term follow-up, the reoperation rate was 8.0%. Significant improvements in the overall quality of life (p < 0.001; median decrease from 45.0 to 11.7) and in the categories of "pain", "control and powerlessness", "social support", "emotional well-being", and "self-image" at the long-term follow-up compared to preoperative values were observed (p-values < 0.01). The sub-analysis showed that patients with deep-infiltrating endometriosis (p < 0.001; median decrease from 49.2 to 10.0) and adenomyosis (p < 0.02; median decrease from 37.5 to 0.0) had the most pronounced long-term postsurgical benefits in terms of quality of life. Patients with (p < 0.001; median decrease from 45.0 to 1.7) and without (p < 0.001; median decrease from 45.42 to 12.5) hormonal influence showed significant improvements in overall quality of life compared to preoperative values. Patients without reoperation demonstrated improved long-term quality of life compared to the preoperative (p < 0.001; median decrease from 45.8 to 9.6) and short-term follow-up results (p < 0.005; median decrease from 19.2 to 9.6). Participants who underwent reoperation showed no improvement in quality of life at the long-term follow-up. Conclusions: The surgical removal of endometriotic lesions has a positive long-term impact on the quality of life, as measured by Endometriosis Health Profile-30.

The latest advances in the pharmacological management of endometriosis.

INTRODUCTION: Endometriosis is a benign disease, characterized by a wide range of symptoms and different degrees of severity, which is why therapy should be individually adapted to the patient's needs. Over the years, a lot of research has gone into finding new therapeutic approaches for this enigmatic disease. AREAS COVERED: This review presents the latest advances in pharmacological management of endometriosis and is solely focused on studies published from 2010 to 2021. EXPERT OPINION: Clinicians and researchers are constantly searching for new therapeutic strategies for endometriosis patients. As there are well-established treatments, however, any new medication should fulfill at least one of the three criteria: increased efficacy, comparable efficacy but a better safety profile, or treatments that have a lack of accompanying contraceptive effects that are seen in most endometriosis treatments. While some new substances show promising results, further studies are needed to demonstrate the fulfillment of one of the above-mentioned criteria.

Association of the Estrogen Receptor 1 Polymorphisms rs2046210 and rs9383590 with the Risk, Age at Onset and Prognosis of Breast Cancer.

Estrogen receptor α (ERα), encoded by the ESR1 gene, is a key prognostic and predictive biomarker firmly established in routine diagnostics and as a therapeutic target of breast cancer, and it has a central function in breast cancer biology. Genetic variants at 6q25.1, containing the ESR1 gene, were found to be associated with breast cancer susceptibility. The rs2046210 and rs9383590 single nucleotide variants (SNVs) are located in the same putative enhancer region upstream of ESR1 and were separately identified as candidate causal variants responsible for these associations. Here, both SNVs were genotyped in a hospital-based case-control study of 409 female breast cancer patients and 422 female controls of a Central European (Austrian) study population. We analyzed the association of both SNVs with the risk, age at onset, clinically and molecularly relevant characteristics and prognosis of breast cancer. We also assessed the concordances between both SNVs and the associations of each SNV conditional on the other SNV. The minor alleles of both SNVs were found to be non-significantly associated with an increased breast cancer risk. Significant associations were found in specific subpopulations, particularly in patients with an age younger than 55 years. The minor homozygotes of rs2046210 and the minor homozygotes plus heterozygotes of rs9383590 exhibited a several-years-younger age at onset than the common homozygotes, which was more pronounced in ER-positive and luminal patients. Importantly, the observed associations of each SNV were not consistently nullified upon correction for the other SNV nor upon analyses in common homozygotes for the other SNV. We conclude that both SNVs remain independent candidate causal variants.

"A little monster inside me that comes out now and again": endometriosis and pain in Austria.

The topics of endometriosis and pain imply far-reaching problems for women's health. Using a qualitative research approach, this paper addresses the subjective experience and effects of pain, the methods for dealing with these issues, and the needs of affected women in Austria. Data were collected by problem-focused interviews conducted with ten women suffering from endometriosis, which were later transcribed and subjected to qualitative content analysis. Findings are therefore described using content-related categories. Results show that negative thoughts and feelings like fear, despair, and anger are associated with endometriosis and pain. Moreover, predominantly negative impacts and changes are found in various areas of life, such as the well-being and psyche of those affected, their attitude towards life in general, partnerships, social life, leisure time and work-life balance. In dealing with endometriosis and pain, both Western biomedicine and complementary medicine treatments are used. Support from one's inner circle of friends and exchange and interaction with others affected by the disease are seen to be invaluable. Attending physicians as well as patients themselves and their private, social, and working environment should encourage open communication about endometriosis and the related pain.

Does the Use of the "Proseek® Multiplex Oncology I Panel" on Peritoneal Fluid Allow a Better Insight in the Pathophysiology of Endometriosis, and in Particular Deep-Infiltrating Endometriosis?

Endometriosis appears to share certain cancer-related processes, such as cell attachment, invasion, proliferation and neovascularization, some of which can also be found in other healthy tissues. In order to better understand the altered milieu of the peritoneal cavity, while acknowledging the reported similarities between endometriosis and neoplastic processes, we applied a multiplex oncology panel to search for specific biomarker signatures in the peritoneal fluid of women with endometriosis, women with deep-infiltrating endometriosis (DIE), as well as controls. In total, 84 patients were included in our study, 53 women with endometriosis and 31 controls. Ninety-two proteins were measured in prospectively collected peritoneal fluid (PF) samples, using the "Proseek® Multiplex Oncology I Panel". We first compared patients with endometriosis versus controls, and in a second step, DIE versus endometriosis patients without DIE. Out of the 92 analyzed proteins, few showed significant differences between the groups. In patients with endometriosis, ICOS ligand, Endothelial growth factor, E-selectin, Receptor tyrosine-protein kinase erbB-2, Interleukin-6 receptor alpha, Vascular endothelial growth factor receptor 2, Fms-related tyrosine kinase 3 ligand, C-X-C motif chemokine 10, Epididymal secretory protein E4 and Folate receptor-alpha were decreased, while Interleukin-6 and Interleukin-8 were increased compared to controls. Looking at patients with DIE, we found Chemokine ligand 19, Stem cell factor, Vascular endothelial growth factor D, Interleukin-6 receptor alpha and Melanoma inhibitory activity to be increased compared to endometriosis patients without DIE. We have shown a distinct regulation of the immune response, angiogenesis, cell proliferation, cell adhesion and inhibition of apoptosis in PF of patients with endometriosis compared to controls. The specific protein pattern in the PF of DIE patients provides new evidence that DIE represents a unique entity of extrauterine endometriosis with enhanced angiogenetic and pro-proliferative features.

"A little monster inside me that comes out now and again": endometriosis and pain in Austria / "Um pequeno monstro dentro de mim que sai de vez em quando": endometriose e dor na Áustria / "Un pequeño monstruo dentro de mí que sale una y otra vez": endometriosis y dolor en Austria

Abstract: The topics of endometriosis and pain imply far-reaching problems for women's health. Using a qualitative research approach, this paper addresses the subjective experience and effects of pain, the methods for dealing with these issues, and the needs of affected women in Austria. Data were collected by problem-focused interviews conducted with ten women suffering from endometriosis, which were later transcribed and subjected to qualitative content analysis. Findings are therefore described using content-related categories. Results show that negative thoughts and feelings like fear, despair, and anger are associated with endometriosis and pain. Moreover, predominantly negative impacts and changes are found in various areas of life, such as the well-being and psyche of those affected, their attitude towards life in general, partnerships, social life, leisure time and work-life balance. In dealing with endometriosis and pain, both Western biomedicine and complementary medicine treatments are used. Support from one's inner circle of friends and exchange and interaction with others affected by the disease are seen to be invaluable. Attending physicians as well as patients themselves and their private, social, and working environment should encourage open communication about endometriosis and the related pain.

Resumo: O tema da endometriose e dor tem implicações relevantes para a saúde das mulheres. O artigo procura contextualizar a experiência subjetiva e os efeitos da dor, os métodos para lidar com essas questões e as necessidades das mulheres afetadas por essa condição na Áustria. Foi escolhida uma abordagem qualitativa para examinar esses temas. Foram realizadas entrevistas focadas em problemas com dez mulheres com história de endometriose. Após a transcrição do material, foi realizada a análise qualitativa do conteúdo. Assim, os achados são retratados com o uso de categorias relacionadas ao conteúdo. Os resultados mostram que pensamentos e sentimentos negativos como medo, desesperança e raiva estão associados com a endometriose e dor. Além disso, são encontrados impactos e mudanças predominantemente negativos em vários domínios da vida, tais como o bem-estar e o estado psicológicos das mulheres afetadas, a atitude geral em relação à vida, parcerias, vida social, tempo de lazer e equilíbrio entre trabalho e vida pessoal. Tanto a medicina ocidental quanto os tratamentos da medicina complementar são utilizados no manejo da endometriose e da dor. O apoio do círculo próximo de amigas e as trocas e interação com outras pessoas afetadas pela doença são vistos como extremamente úteis. Os médicos atendentes e as próprias pacientes e seus ambientes privados, sociais e laborais devem incentivar a comunicação aberta sobre a endometriose e a dor associada.

Resumen: La endometriosis y su dolor asociado implican problemas profundos para la salud de las mujeres. El objetivo de este trabajo es identificar la experiencia subjetiva y los efectos del dolor, los métodos para tratarlos, así como las necesidades de las mujeres afectadas en Austria. Para el examen de los temas mencionados anteriormente, se eligió un enfoque de investigación cualitativo. Las entrevistas enfocadas en los problemas se realizaron con diez mujeres que sufrían endometriosis. Tras la transcripción material de los datos, el análisis se realizó usando un análisis cualitativo de contenido. Por lo tanto, los resultados se describen usando categorías relacionadas con el contenido. Los resultados muestran que los pensamientos negativos y los sentimientos como miedo, desesperación, y enfado están conectados con la endometriosis y el dolor. Además, predominantemente se encontraron impactos negativos y cambios en varias áreas de la vida, tales como: bienestar, psique de quienes se veían afectadas, su actitud ante la vida en general, relaciones, vida social, equilibrio entre tiempo de ocio y trabajo. Para enfrentarse a la endometriosis y el dolor, se utilizan tratamientos biomédicos occidentales, así como medicina complementaria. El apoyo del círculo íntimo de los afectados, como son los amigos, así como el intercambio e interacción con otras personas afectadas por la enfermedad parecen ser muy útiles. Ir al médico, el entorno privado, social y laboral de las pacientes, así como ellas mismas, deben estar y ser animadas para una comunicación abierta sobre la endometriosis y el dolor relacionado con la misma.