“Better late than never but never late is better”, especially in young women. A multicenter Italian study on diagnostic delay for symptomatic endometriosis

Pino, Ida; Belloni, Gaia Maria; Barbera, Valeria; Solima, Eugenio; Radice, Davide; Angioni, Stefano; Arena, Saverio; Bergamini, Valentino; Candiani, Massimo; Maiorana, Antonio; Mattei, Alberto; Muzii, Ludovico; Pagliardini, Luca; Porpora, Maria Grazia; Remorgida, Valentino; Seracchioli, Renato; Vercellini, Paolo; Zullo, Fulvio; Zupi, Errico; Vignali, M; Busacca, Mauro; Nicola, D’Alterio Maurizio; Cecilia, Bonin; Alessio, Perandini; Viganò, Paola; Ludovica, Bartiromo; Ottolina, Jessica; Matteo, Schimberni; Incandela, Domenico; Alio, Walter; Perelli, Federica; Piacenti, Ilaria; Scaramuzzino, Sara; Massarotti, Claudia; Simona, Del Forno; Berlanda, Nicola; Edgardo, Somigliana; Agnese, Donati; Centini, Gabriele; Lazzeri, Lucia; Luca, La Banca; Exacoustos, C.; Sorrenti, Giuseppe; Venturella, Roberta

doi:10.1080/13625187.2022.2128644

Cited by 21 publications

(17 citation statements)

References 25 publications

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“…Endometriosis can be associated with a range of severe, disabling symptoms, including but not limited to pain with menstruation, penetration, bowel movement, and/or urination, chronic pain, infertility, fatigue (75), and with occurrences like preeclampsia and other adverse pregnancy outcomes (81,82). Invasive surgical and histological diagnosis, which is widely considered the gold standard to diagnose (83), stigma, symptom normalization, and lack of practitioner awareness (75) drive average diagnostic delays of up to 11 years (84)(85)(86)(87), which may reduce understanding of endometriosis prevalence in LC.…”

Section: Endometriosismentioning

confidence: 99%

Female reproductive health impacts of Long COVID and associated illnesses including ME/CFS, POTS, and connective tissue disorders: a literature review

Pollack¹,

Saltza²,

McCorkell³

et al. 2023

Front. Rehabil. Sci.

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Long COVID disproportionately affects premenopausal women, but relatively few studies have examined Long COVID's impact on female reproductive health. We conduct a review of the literature documenting the female reproductive health impacts of Long COVID which may include disruptions to the menstrual cycle, gonadal function, ovarian sufficiency, menopause, and fertility, as well as symptom exacerbation around menstruation. Given limited research, we also review the reproductive health impacts of overlapping and associated illnesses including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), connective tissue disorders like Ehlers-Danlos syndrome (EDS), and endometriosis, as these illnesses may help to elucidate reproductive health conditions in Long COVID. These associated illnesses, whose patients are 70%–80% women, have increased rates of dysmenorrhea, amenorrhea, oligomenorrhea, dyspareunia, endometriosis, infertility, vulvodynia, intermenstrual bleeding, ovarian cysts, uterine fibroids and bleeding, pelvic congestion syndrome, gynecological surgeries, and adverse pregnancy complications such as preeclampsia, maternal mortality, and premature birth. Additionally, in Long COVID and associated illnesses, symptoms can be impacted by the menstrual cycle, pregnancy, and menopause. We propose priorities for future research and reproductive healthcare in Long COVID based on a review of the literature. These include screening Long COVID patients for comorbid and associated conditions; studying the impacts of the menstrual cycle, pregnancy, and menopause on symptoms and illness progression; uncovering the role of sex differences and sex hormones in Long COVID and associated illnesses; and addressing historical research and healthcare inequities that have contributed to detrimental knowledge gaps for this patient population.

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Section: Endometriosismentioning

confidence: 99%

Female reproductive health impacts of Long COVID and associated illnesses including ME/CFS, POTS, and connective tissue disorders: a literature review

Pollack¹,

Saltza²,

McCorkell³

et al. 2023

Front. Rehabil. Sci.

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“…The global burden of endometriosis is displayed by the deteriorated QoL of affected patients, commonly missed days of work, reduced life‐course potential, and high treatment costs 4,26 . Moreover, it is often unrecognized, which is common in Western as well as Arabic and African countries 3,5,13,14,19–21,27 . Nevertheless, patients with endometriosis must overcome two barriers: first, to be diagnosed, ideally on time; and second, to access effective symptom management throughout an interdisciplinary approach 8 .…”

Section: Discussionmentioning

confidence: 99%

“…Two well‐known epidemiological facts about endometriosis are that it affects approximately 10% of women of reproductive age and that the diagnostic delay ranges from 7 to 13 years from symptom onset to the diagnosis 1–3 . Despite being considered a benign gynecological disease, endometriosis has a negative impact on quality of life (QoL) and life‐course potential, with an increased risk for malignancies 4–6 .…”

Section: Introductionmentioning

confidence: 99%

Three‐dimensional model for improvement of endometriosis care (3D‐E)

Lukac,

Hancke,

Janni

et al. 2023

Intl J Gynecology & Obste

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ObjectiveEndometriosis affects approximately 10% of women of reproductive age and leads to significant morbidity and financial burden. Consequently, countries such as France and Germany are formulating strategies to combat endometriosis. In this study, we propose the implementation of our three‐dimensional model (3D‐E) to raise awareness about endometriosis and enhance timely diagnosis, treatment, and long‐term care for affected patients.MethodsBased on the adapted Six Sigma Principle and the modified recommendation of Sales et al. for implementing evidence‐based findings into a clinical routine, we first conducted a comprehensive investigation to identify risk factors leading to diagnostic delay of endometriosis. After identifying improvable factors, the applicable options were selected due to defined criteria such as integrability in the clinical routine, cost‐effectiveness, and evidence‐based‐principle. Finally, solutions feasible for health care providers were integrated and the 3D‐E model was established.ResultsSome of the main risk factors contributing to diagnostic delays are symptoms acceptance and misinterpreted symptoms, especially if presenting to nongynecologists in cases of extragenital endometriosis with atypical presentation. Therefore, we tried to sensitize colleagues (first dimension) with a review paper in Germany's largest medical journal and started an elective for medical students (second dimension) at our university. In order to involve additional health care professionals in endometriosis care (third dimension), we are preparing the concept of the EndoNurse.ConclusionThe 3D‐E model is a relatively low‐cost, comprehensive, and worldwide adaptable approach for facilitating knowledge transfer, sensitizing health care providers, and improving endometriosis diagnostics and therapy for patients with endometriosis who are in the center of the model.

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“…3,5,[8][9][10] On average, patients experience a delay of 6-14 years between symptom onset and diagnosis of endometriosis. [11][12][13][14][15][16][17][18][19] Multiple barriers contribute to this diagnostic delay, including patient and physician normalisation of symptoms, limited understanding of disease aetiology and limited access to specialised care. 20,21 Research and treatment guidelines on endometriosis focus largely on adults, but approximately two-thirds of adult patients diagnosed with endometriosis describe symptom onset during adolescence.…”

Section: Introductionmentioning

confidence: 99%

“…The disease causes dysmenorrohea, infertility, chronic pelvic pain, significantly decreased quality of life, 1–4 social stigma 5–7 and economic burden 3,5,8–10 . On average, patients experience a delay of 6–14 years between symptom onset and diagnosis of endometriosis 11–19 . Multiple barriers contribute to this diagnostic delay, including patient and physician normalisation of symptoms, limited understanding of disease aetiology and limited access to specialised care 20,21 …”

Section: Introductionmentioning

confidence: 99%

Patient experiences of endometriosis diagnosis: A mixed methods approach

Requadt,

Nahlik,

Jacobsen

et al. 2023

BJOG

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ObjectiveTo examine patient‐described experiences of endometriosis diagnosis.DesignMixed‐methods study.SettingOnline patient‐led endometriosis support groups.Population or SamplePeople with endometriosis aged over 18.MethodsA survey with qualitative and quantitative questions was distributed through online patient‐led endometriosis support groups. Descriptive statistics were used to analyse quantitative data, and thematic analysis was used for qualitative responses. Quantitative and qualitative data were triangulated to examine patient experiences of endometriosis diagnosis across age groups.Main outcome measuresExperiences of endometriosis diagnosis among people with endometriosis.ResultsA total of 2017 people with endometriosis from 63 countries responded to the questionnaire. Patients experienced an average delay of 3.7 years between symptom onset and first presentation of symptoms to a physician (the care‐seeking delay) and an average delay of 5.8 years between first presentation of symptoms to a physician and diagnosis of endometriosis (the healthcare‐related delay). Patients experienced an average total diagnostic delay of 9.6 years. Participants aged over 35 at the time of the study reported significantly longer times to receive an endometriosis diagnosis (mean 10.7, 95% confidence interval [CI] 10.2–11.2) compared with participants age 18–24 (6.8, 95% CI 6.1–7.5 years). The qualitative analysis identified the following themes: physicians normalised endometriosis symptoms, patients felt their symptoms were ignored by physicians because they were considered unreliable, and participant character attributes (e.g. age, appearance, weight or physical ability) led to clinician dismissal.ConclusionsPeople with endometriosis of all age groups reported pervasive negative healthcare experiences during their adolescence. Patients experience delays in seeking care and in receiving a diagnosis once presenting for care.

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“Better late than never but never late is better”, especially in young women. A multicenter Italian study on diagnostic delay for symptomatic endometriosis

Cited by 21 publications

References 25 publications

Female reproductive health impacts of Long COVID and associated illnesses including ME/CFS, POTS, and connective tissue disorders: a literature review

Female reproductive health impacts of Long COVID and associated illnesses including ME/CFS, POTS, and connective tissue disorders: a literature review

Three‐dimensional model for improvement of endometriosis care (3D‐E)

Patient experiences of endometriosis diagnosis: A mixed methods approach

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