The Swiss Endometriosis Database: a retrospective multicentre cohort study on pain levels and multimodal treatment needs of endometriosis patients

Sara Imboden, Imboden S, Lang S, Selina Lang, Sylvie Lang, A Martino, Antonell Martino, Antonalla Martino, Peter Fehr, Fehr PM, Peter Martin Fehr, Lea Duempelmann, Cloé Vaineau, Willi H, Heike Willi, Nicolas Samartzis, S. Kamm, Kamm S, Simone Kamm, Dimitri Sarlos, Sarlos D, Verta S, Stephanie Verta, Tina Rohrbach, Rohrbach T, Polli C, Christian Polli, Alexandra Kochanowski, Kochanowski A, Mueller M, Michael Mueller, Michael D. Mueller
Swiss medical weekly · 2025 · vol. 155(6) , pp. 3854 · doi:10.57187/s.3854 · PMID:40570280 · W4411611989
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This retrospective multicenter study analyzed data from 3403 endometriosis patients in Swiss centers, finding high pain scores, frequent multiple phenotypes, and diverse treatment recommendations.

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This retrospective multicentre cohort study analyzed 3538 women’s baseline questionnaire data from their first consultation at Swiss-certified endometriosis centres in 2022, focusing on symptom types, pain severity using visual analogue scale (VAS), clinical findings, and therapy recommendations. Among 3403 women diagnosed with endometriosis at first consultation, dysmenorrhoea VAS scores were high (median 8/10), with general pain reported by most patients; peritoneal endometriosis was the most common phenotype, while many patients had multiple working hypotheses, especially combinations of peritoneal endometriosis and adenomyosis. Endocrine therapy and other medical options were the most frequently recommended treatments, while surgery and multimodal pain therapy were recommended less often, and correlations between symptoms/diagnoses and recommendations were limited to a few associations. Relevance to endometriosis: this paper is centrally about endometriosis and also specifically quantifies adenomyosis co-occurrence and phenotype patterns in the studied endometriosis clinic population.

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Abstract

STUDY AIMS: This study aimed to deepen the understanding of endometriosis symptoms, types, and therapy recommendations for Swiss endometriosis patients in Swiss-certified endometriosis centres in 2022. METHODS: In this exploratory retrospective multicentre cohort study, data from 3538 women who had their first consultation at a certified endometriosis centre in Switzerland in 2022 were analysed retrospectively. Data were collected by using questionnaires that were filled out by the patient and the physician at the first consultation, to evaluate parameters that included the main reason for consultation, visual analogue scale (VAS) scores for pain, clinical findings and therapy recommendations. RESULTS: This study analysed all patients who had provided consent and were diagnosed with endometriosis (n = 3403, 96.2%) during their first consultation at a Swiss-certified endometriosis centre in 2022. The median age was 33.0 years (11-66 years). Of 812 documented VAS scores, 71.6% of the patients felt general pain, resulting in a median VAS score for dysmenorrhoea of 8 (0-10). After the first examination, peritoneal endometriosis (n = 1453, 54.8%) was diagnosed most often, followed by adenomyosis (n = 1366, 51.5%), deep infiltrating endometriosis (n = 857, 32.3%) and cystic/ovarian endometriosis (n = 643, 24.2%). In 46.2% of the patients, more than one working hypothesis, with regard to their condition, was identified - in most cases, a combination of peritoneal endometriosis and adenomyosis (15.6%). Endocrine therapy was the most frequent treatment recommended (60.6%), followed by recommendations for medical pain therapy (57%), surgery (34.4%), complementary procedures (23.5%), reproductive therapy (5.7%) and multimodal pain therapy (5.6%). Analysis of correlations between symptoms, diagnosis and treatment recommendations showed only a few notable findings such as correlations between peritoneal endometriosis and hormonal-/medical treatment as well as correlations between deep infiltrating endometriosis and treatment recommendation for surgery. CONCLUSION: The high VAS scores in dysmenorrhoea underline the degree of suffering of patients with endometriosis seeking consultation at a certified endometriosis centre. Most patients presented multiple phenotypes with uncorrelated symptoms and diverse as well as multimodal treatment options were indicated, underlining the complexity and individuality of the disease.
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Results

This study analysed all patients who had provided consent and were diagnosed with endometriosis (n = 3403, 96.2%) during their first consultation at a Swiss-certified endometriosis centre in 2022. The median age was 33.0 years (11–66 years). Of 812 documented VAS scores, 71.6% of the patients felt general pain, resulting in a median VAS score for dysmenorrhoea of 8 (0–10). After the first examination, peritoneal endometriosis (n = 1453, 54.8%) was diagnosed most often, followed by adenomyosis (n = 1366, 51.5%), deep infiltrating endometriosis (n = 857, 32.3%) and cystic/ovarian endometriosis (n = 643, 24.2%). In 46.2% of the patients, more than one working hypothesis, with regard to their condition, was identified – in most cases, a combination of peritoneal endometriosis and adenomyosis (15.6%). Endocrine therapy was the most frequent treatment recommended (60.6%), followed by recommendations for medical pain therapy (57%), surgery (34.4%), complementary procedures (23.5%), reproductive therapy (5.7%) and multimodal pain therapy (5.6%). Analysis of correlations between symptoms, diagnosis and treatment recommendations showed only a few notable findings such as correlations between peritoneal endometriosis and hormonal-/medical treatment as well as correlations between deep infiltrating endometriosis and treatment recommendation for surgery.

Conclusion

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Outcome instruments

VAS-pain

Condition tags

dysmenorrheaendometriosischronic_pelvic_painadenomyosisdie_deep_infiltrating

MeSH descriptors

Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis

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