Obstetrics and gynecology in <scp>Ehlers‐Danlos</scp> syndrome: A brief review and update

Blagowidow, Natalie

doi:10.1002/ajmg.c.31945

Cited by 4 publications

(3 citation statements)

References 30 publications

(59 reference statements)

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“…This article presents an international consensus of expert guidelines in the management of childbearing with hEDS/HSD brought about using systematic and co-creation approaches along with a variety of PPI activities. While we have built upon previous care considerations [ 11 – 13 ], these guidelines represent the first of their kind from an international multidisciplinary collaboration, including patient perspectives. In our experts’ view, many of the guidelines made can be applicable in other subtypes of EDS (except vascular EDS), though each type should be considered individually via future research.…”

Section: Discussionmentioning

confidence: 99%

“…Prevalence of obstetric, pelvic and reproductive system issues reported by those childbearing with hEDS/HSD are significantly greater than in the general childbearing population [ 9 , 10 ]. Symptoms can be debilitating; they may either be exacerbated or improve during pregnancy and birth, when hormonal levels are elevated [ 7 , 11 – 13 ]. Still, there is scarce literature related to perinatal care in the context of hEDS/HSD, leading to potential misconceptions and a lack of knowledge in some health care professionals [ 7 , 14 ].…”

Section: Introductionmentioning

confidence: 99%

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Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A scoping review and expert co-creation of evidence-based clinical guidelines

Pezaro,

Brock,

Buckley

et al. 2024

PLoS ONE

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Objective To co-create expert guidelines for the management of pregnancy, birth, and postpartum recovery in the context of hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). Design Scoping Review and Expert Co-creation. Setting United Kingdom, United States of America, Canada, France, Sweden, Luxembourg, Germany, Italy, and the Netherlands. Sample Co-creators (n = 15) included expertise from patients and clinicians from the International Consortium on the Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders, facilitated by the Ehlers-Danlos Society. Methods A scoping review using Embase, Medline, the Cochrane Central Register of Controlled Trials and CINHAL was conducted from May 2022 to September 2023. Articles were included if they reported primary research findings in relation to childbearing with hEDS/HSD, including case reports. No language limitations were placed on our search, and our team had the ability to translate and screen articles retrieved in English, French, Spanish, Italian, Russian, Swedish, Norwegian, Dutch, Danish, German, and Portuguese. The Mixed Methods Appraisal Tool was used to assess bias and quality appraise articles selected. The co-creation of guidelines was based on descriptive evidence synthesis along with practical and clinical experience supported by patient and public involvement activities. Results Primary research studies (n = 14) and case studies (n = 21) including a total of 1,260,317 participants informed the co-creation of guidelines in four overarching categories: 1) Preconceptual: conception and screening, 2) Antenatal: risk assessment, management of miscarriage and termination of pregnancy, gastrointestinal issues and mobility, 3) Intrapartum: risk assessment, birth choices (mode of birth and intended place of birth), mobility in labor and anesthesia, and 4) Postpartum: wound healing, pelvic health, care of the newborn and infant feeding. Guidelines were also included in relation to pain management, mental health, nutrition and the common co-morbidities of postural orthostatic tachycardia syndrome, other forms of dysautonomia, and mast cell diseases. Conclusions There is limited high quality evidence available. Individualized strategies are proposed for the management of childbearing people with hEDS/HSD throughout pregnancy, birth, and the postpartum period. A multidisciplinary approach is advised to address frequently seen issues in this population such as tissue fragility, joint hypermobility, and pain, as well as common comorbidities, including dysautonomia and mast cell diseases.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A scoping review and expert co-creation of evidence-based clinical guidelines

Pezaro,

Brock,

Buckley

et al. 2024

PLoS ONE

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“…Female patients with EDS often have bothersome pelvic floor disorders including pelvic organ prolapse (POP) and stress urinary incontinence (SUI) [ 2 – 4 ]. These disorders can present at a young age without the typical risk factors such as pregnancy and delivery or menopause.…”

Section: Introductionmentioning

confidence: 99%

Pelvic Organ Prolapse in Ehlers-Danlos Syndrome

Nazemi

Shapiro

Nagpal

et al. 2023

Case Reports in Urology

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Ehlers-Danlos syndrome (EDS) is a hereditary tissue and collagen synthesis disorder that can predispose patients to gynecologic and obstetric complications. Female patients often suffer from bothersome pelvic floor disorders, but due to the medical complexity of EDS, special considerations are needed for the treatment of pelvic organ prolapse and associated incontinence. In this paper, we present three unique cases of pelvic organ prolapse (POP) in EDS patients and delve deeper into the multidisciplinary approach involving urogynecology, rheumatology, physiatry, gastroenterology, and anesthesiology required to appropriately manage this condition.

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Bulging of the bladder and vagina, with difficulty urinating

Blomquist

2024

The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders

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Obstetrics and gynecology in Ehlers‐Danlos syndrome: A brief review and update

Cited by 4 publications

References 30 publications

Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A scoping review and expert co-creation of evidence-based clinical guidelines

Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A scoping review and expert co-creation of evidence-based clinical guidelines

Pelvic Organ Prolapse in Ehlers-Danlos Syndrome

Bulging of the bladder and vagina, with difficulty urinating

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