HSD and EDS Research
33 studies as of March, 2022
STUDIES APPEAR IN ORDER FROM OLDEST TO NEWEST ADDED
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EDS and the Circulatory System
Heart, veins, arteries, capillaries, and blood.
CONNECTIVE TISSUE DISEASE AND THORACIC AORTIC ANEURYSMS
Odofin, X., Houbby, N., Hagana, A., Nasser, I., Ahmed, A., & Harky, A. (2021). Thoracic aortic aneurysms in patients with heritable connective tissue disease. Journal of Cardiac Surgery, 36(3), 1083–1090. Portico.
The authors completed a review of studies regarding thoracic aortic aneurysms (TAAs) and EDS. They found that there were complications of repair : mortality, pneumonia, haemorrhage, tracheostomy, endoleak, vocal cord paresis, and reintervention.
Summary by Kimberly Czotter
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NON vEDS PATIENTS AND VASCULAR PHENOTYPES
D’hondt, S., Van Damme, T., & Malfait, F. (2017). Vascular phenotypes in nonvascular subtypes of the Ehlers-Danlos syndrome: a systematic review. Genetics in Medicine, 20(6), 562–573.
"The authors completed a systematic review of studies of vascular complications in non-vEDS subtypes. They found 112 papers published since 2017, finding that of 467 patients, 77 had severe vascular complications. These included hematomas (mcEDS and clEDS), intracranial hemorrhage (dES) and arterial dissections (cEDS and kEDS). Minor vascular complications were found in cvEDS, aEDS, sEDS, and pEDS.
documentation. This review will help familiarize clinicians with the spectrum of vascular complications in EDS and guide follow-up and management."
Summary by Kimberly Czotter
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EDS and the Digestive System
Teeth, esophagus, stomach, intestines, and vitamin/mineral deficiencies.
GI DISORDERS IN hEDS AND HSD
Beckers, A. B., Keszthelyi, D., Fikree, A., Vork, L., Masclee, A., Farmer, A. D., & Aziz, Q. (2017). Gastrointestinal disorders in joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type: A review for the gastroenterologist. Neurogastroenterology & Motility, 29(8), e13013. Portico.
The authors reviewed various studies, finding that a majority of people with hEDS and JHS have GI symptoms, especially GI disorders such as: celiac (16%), functional dyspepsia, IBS, gastroesophageal reflux, postprandial distress, constipation, and gastroparesis. GI symptoms are especially prevalent in those with problems related to: fatigue, skin, orthostatic intolerance, immunity, urogynecological, visual, and respiratory systems. *Uses outdated diagnostic criteria*
Summary by Kimberly Czotter
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EDS AND PERIODONTAL MANIFESTATIONS
Kapferer-Seebacher, I., Lundberg, P., Malfait, F., & Zschocke, J. (2017). Periodontal manifestations of Ehlers-Danlos syndromes: A systematic review. Journal of Clinical Periodontology, 44(11), 1088–1100. Portico.
The authors analyzed 43 studies on pEDS (30) and other EDS subtypes (13) to find the prevalence of periodontal issues related to EDS. They found that there was a lack of research regarding dental abnormalities in EDS subtypes and suggest more research needs to be completed.
Summary by Kimberly Czotter
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COLONIC COMPLICATIONS AND vEDS
Speake, D., Dvorkin, L., Vaizey, C. J., & Carlson, G. L. (2019). Management of colonic complications of type IV Ehlers–Danlos syndrome: a systematic review and evidence‐based management strategy. Colorectal Disease, 22(2), 129–135. Portico.
vEDS (referred as Type IV EDS in the article) is related to spontaneous vascular rupture or colonic perforation. The authors reviewed literature to identify common outcomes of operation for colon perforation finding a risk of re-perforation. They suggest that an abdominal colectomy is safest, and that end colostomy is high risk for perforation.
Summary by Kimberly Czotter
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GI SURGERY NEEDS AND RISK IN EDS PATIENTS
Kulas Søborg, M.-L., Leganger, J., Rosenberg, J., & Burcharth, J. (2016). Increased Need for Gastrointestinal Surgery and Increased Risk of Surgery-Related Complications in Patients with Ehlers-Danlos Syndrome: A Systematic Review. Digestive Surgery, 34(2), 161–170. Portico.
The researchers reviewed 11 studies regarding gastrointestinal surgeries and mortality in EDS patients. They found that there was a higher incidence of surgery for GI complications such as: perforation, hemorrhage, rupture of intra-abdominal organs, and rectal prolapse. Those with vEDS were especially impacted with 33% undergoing GI surgery.
Summary by Kimberly Czotter
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PRESCRIPTION BURDEN FOR RESPIRATORY AND GI MEDICATION IN EDS PATIENTS
Bascom, R., Dhingra, R., Francomano, C. A., & Schubart, J. R. (2021). A case–control study of respiratory medication and co‐occurring gastrointestinal prescription burden among persons with Ehlers–Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. Portico.
This study looks at 10 years of prescription claim data to find the use of respiratory and GI medication in EDS women. They found that when compared to controls, EDS patients had a higher prescription rate of: inhaled corticosteroids, oral steroids, H1-antihistamines, short-acting and long-acting beta agonists, decongestants, leukotriene modifiers , muscarinic antagonists, and co-occurring prescriptions.
Summary by Kimberly Czotter
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hEDS AND GI SYMPTOMS: UNIVERSITY STUDENTS
Fikree, A., Aktar, R., Morris, J. K., Grahame, R., Knowles, C. H., & Aziz, Q. (2016). The association between Ehlers-Danlos syndrome-hypermobility type and gastrointestinal symptoms in university students: a cross-sectional study. Neurogastroenterology & Motility, 29(3), e12942. Portico. https://doi.org/10.1111/nmo.12942
The authors completed a cross-sectional study evaluating the presence of somatic, pain, autonomic, gastrointestinal, psychological and quality of life. They compared 162 university students with hEDS (74) and those with HSD (88).They found those with hEDS were more likely to have multiple gastrointestinal symptoms like early satiety, autonomic symptoms, somatic symptoms and postprandial fullness. Psychopathology differences were not significant, and those with hEDS had a lower quality of life due to pain. *Uses outdated hEDS diagnostic criteria*
Summary by Kimberly Czotter
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EDS and Hormones (Endocrine System)
How hormones and menstruation affect EDS and hypermobility.
FASCIAE SENSITIVITY TO ESTROGENS
Fede, C., Pirri, C., Fan, C., Albertin, G., Porzionato, A., Macchi, V., de Caro, R., & Stecco, C. (2019). Sensitivity of the fasciae to sex hormone levels: Modulation of collagen-I, collagen-III and fibrillin production. PLOS ONE, 14(9), e0223195. https://doi.org/10.1371/journal.pone.0223195
This study does not specifically address EDS, but explores the reality that women experience greater myofascial pain than men and its relationship to sex hormones. This immunocytochemical analysis of fibrillin, collagen-1, and collagen-2 uses human fibroblasts (isolated from human). They studied these following in vitro treatment with varying levels of beta-estradiol and relaxin. The authors found that fascial cells modulate ECM components in line with hormonal shifts - for example, decreased collagen-1 during periovulatory phase and that relaxin decreased the ECM production. They suggest that women experiencing hormonal dysfunction may cause dysregulation of their ECM production in the fasciae.
Summary by Kimberly Czotter
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ANIMAL STUDY: EFFECT OF PROGESTERONE AND ESTROGEN ON COLLAGEN
Kimura, K., Zhou, H., Orita, T., Kobayashi, S., Wada, T., Nakamura, Y., Nishida, T., & Sonoda, K. H. (2016). Inhibition by all-trans retinoic acid of collagen degradation mediated by corneal fibroblasts. Clinical & Experimental Ophthalmology, 44(6), 502–508. https://doi.org/10.1111/ceo.12709
This study cultured corneal fibroblasts from rabbits in a collagen gel either without or with sex hormones. They measured the degradation of collagen, finding that both progesterone and 17β-Estradiol (an estrogen) inhibited interleukin (IL)–1β–induced collagen degradation; whereas DHEA and testosterone had no effect. Consequently, this suggests that testosterones do not affect collagen synthesis; whereas estrogens do.
Summary by Kimberly Czotter
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EDS and the Immune System
Lymph nodes, white blood cells, and conditions we are likely to catch.
EDS and the Musculoskeletal System
EDS and muscles, bones, tendons, overall movement and more.
FRACTURES IN HYPERMOBILE INCIDENTS AND CHILD ABUSE
Holick, M. F., Hossein-Nezhad, A., & Tabatabaei, F. (2017). Multiple fractures in infants who have Ehlers-Danlos/hypermobility syndrome and or vitamin D deficiency: A case series of 72 infants whose parents were accused of child abuse and neglect. Dermato-Endocrinology, 9(1), e1279768.
The authors studied 72 cases where parents were accused of abuse because infants had severe, multiple fractures and bruising. These children were taken away from their parents due to the suspected abuse, and the researchers found that 93% of these suspected child-abuse cases actually were related to undiagnosed EDS, whereas the other 7% stemmed from vitamin D deficiency (Rickets). This study is important to demonstrate how important diagnosis is because of issues with bone and skin fragility which may present similar to child abuse.
Summary by Kimberly Czotter
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hEDS AND HSD: FRACTURE PREVALENCE AND REDUCED BONE SIZE
" Banica, T., Coussens, M., Verroken, C., Calders, P., De Wandele, I., Malfait, F., Zmierczak, H.-G., Goemaere, S., Lapauw, B., & Rombaut, L. (2019). Higher fracture prevalence and smaller bone size in patients with hEDS/HSD—a prospective cohort study. Osteoporosis International, 31(5), 849–856. "
The authors state that an increased fracture risk in EDS patients is known, but the reason behind this is not understood. They aimed to better understand this by comparing hEDS/HSD patients to controls regarding: cortical and tibial volumetric bone density, bone mineral content, leg muscle area, and cortical bone geometry. This longitudinal study spanned 8 years, and hEDS/HSD patients had a smaller cortical bone area, smaller cortical thickness, and smaller leg muscle area - all combined with a higher fracture prevalence than controls. They found that after 8 years, muscle density decreased in hEDS/HSD patients but that bone parameters did not change. This suggests that there is not accelerated bone loss in hEDS/HSD persons.
Summary by Kimberly Czotter
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IMPAIRED PROPRIOCEPTION IN EDS
Clayton, H. A., Jones, S. A. H., & Henriques, D. Y. P. (2015). Proprioceptive precision is impaired in Ehlers–Danlos syndrome. SpringerPlus, 4(1).
The authors conducted multiple studies demonstrating that proprioception (sense of body in space) is negatively impacted in persons with Ehlers Danlos Syndrome (EDS) and other similar connective tissue disorders. They found the deficit was related to joint hypermobility severity, but not the magnitude of chronic pain.
Summary by Kimberly Czotter
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ALTERED FOOT AND ANKLE KINEMATICS IN hEDS/HSD
Vermeulen, S., De Mits, S., De Ridder, R., Calders, P., De Schepper, J., Malfait, F., & Rombaut, L. (2020). Altered multi‐segment ankle and foot kinematics during gait in patients with Hypermobile Ehlers‐Danlos Syndrome/Hypermobility spectrum disorder. A case‐control study. Arthritis Care & Research. Portico.
This case study of 23 hEDS/HSD women and 23 controls evaluated foot and ankle kinematics using the Ghent Foot Model. They found that pain and foot dysfunction were higher in women with hEDS/HSD and that they had increased: eversion position, dorsiflexion, inversion, plantar flexion, and abduction throughout the feet.
Summary by Kimberly Czotter
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VERTEBRAL FRACTURES AND EDS
Mazziotti, G., Dordoni, C., Doga, M., Galderisi, F., Venturini, M., Calzavara-Pinton, P., Maroldi, R., Giustina, A., & Colombi, M. (2016). High prevalence of radiological vertebral fractures in adult patients with Ehlers–Danlos syndrome. Bone, 84, 88–92. https://doi.org/10.1016/j.bone.2015.12.007
This cross-sectional study, the authors investigated the prevalence of radiological vertebral fractures, back pain, and BMD in EDS patients (52) and control subjects (197) attending an outpatient bone clinic. They found vertebral fractures were significantly more prevalent in EDS patients (38.5%) than controls (5%), but no significant BMD differences. There was no correlation between BMD and vertebral fractures which supports the thought that EDS impairs bone quality.
Summary by Kimberly Czotter
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MUSCLE STRENGTH OVER TIME IN hEDS/HSD PATIENTS
Coussens, M., Calders, P., Lapauw, B., Celie, B., Banica, T., De Wandele, I., Pacey, V., Malfait, F., & Rombaut, L. (2021). Does Muscle Strength Change Over Time in Patients With Hypermobile Ehlers‐Danlos Syndrome/Hypermobility Spectrum Disorder? An Eight‐Year Follow‐Up Study. Arthritis Care & Research, 73(7), 1041–1048. Portico. https://doi.org/10.1002/acr.24220
The authors completed a longitudinal study (8 years) following 30 AFAB hEDS/HSD patients and 17 controls to investigate their muscle strength, strength endurance, and posture maintenance. Muscle mass and density were also evaluated, finding that the hEDS/HSD group had lower muscle strength and strength endurance compared to the control group.
Summary by Kimberly Czotter
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INCREASING TENDON SYNTHESIS RATE IN cEDS WITH GROWTH FACTOR
Nielsen, R. H., Holm, L., Jensen, J. K., Heinemeier, K. M., Remvig, L., & Kjaer, M. (2014). Tendon protein synthesis rate in classic Ehlers-Danlos patients can be stimulated with insulin-like growth factor-I. Journal of Applied Physiology, 117(7), 694–698. https://doi.org/10.1152/japplphysiol.00157.2014
This preliminary controlled study investigated cEDS patients (n=5) and healthy controls (n=10) to see whether they could stimulate the protein synthesis rate in tendons and skin following an injection of insulin-like growth factor-I (IGF-I). At 24 hr and 6 hr prior to sampling, they injected one patellar tendon with 0.1mL of IGF-I and the contralateral tendon with 0.1mL isotonic saline (control). They sound that cEDS and healthy participants had similar baseline protein synthesis rates; but that following injection, the cEDS tendon synthesis rates increased significantly compared to controls (~ 7x the rate).
Summary by Kimberly Czotter
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EDS and the Nervous System
Brain, nerves, and senses.
HYPERMOBILITY AND HEADACHES
Malhotra, A., Pace, A., Ruiz Maya, T., Colman, R., Gelb, B. D., Mehta, L., & Kontorovich, A. R. (2020). Headaches in hypermobility syndromes: A pain in the neck? American Journal of Medical Genetics Part A, 182(12), 2902–2908. Portico.
The authors completed a retrospective study on the incidence of headache and cervicalgia (neck pain) in patients with EDS and HSD in 140 over a 2-year period. They found a majority had headache and neck pain - often in the form of a migraine and cervical spondylosis. They investigated the impact of cervical facet procedures which suggested that patients may experience high rates of cervicogenic headaches and degenerative spinal pathology.
Summary by Kimberly Czotter
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HSD AND EDS: NEURODEVELOPMENTAL DIFFERENCES
Baeza‐Velasco, C. (2021). Neurodevelopmental atypisms in the context of joint hypermobility, hypermobility spectrum disorders, and Ehlers–Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. Portico.
The authors reviewed the literature to find relationships between hEDS/HSD/JHM and neurological abnormalities including: hyperactivity, attention deficit, autism, and learning, communication, and motor problems. As disability increases with these neurological abnormalities, the authors suggest increased awareness among clinicians and researchers to promote assessment, diagnosis, and management strategies.
Summary by Kimberly Czotter
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AUTONOMIC DIFFERENCES IN HSD AND hEDS
Martinez, K. L., Mauss, C., Andrews, J., Saboda, K., Huynh, J. M., Sanoja, A. J., Jesudas, R., Byers, P. H., & Laukaitis, C. M. (2021). Subtle differences in autonomic symptoms in people diagnosed with hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders. American Journal of Medical Genetics Part A, 185(7), 2012–2025. Portico.
The authors evaluated various symptoms related to hEDS/HSD: fatigue, kinesiophobia, gastrointestinal, and autonomic function. They found that those with hEDS and HSD patients had similar frequency and severity of symptoms with the exception of autonomic symptoms. The authors suggest further studies to understand why those with hEDS were more severely affected.
Summary by Kimberly Czotter
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CONNECTIVE TISSUES AND SPONTANEOUS CSF LEAKS
Reinstein, E., Pariani, M., Bannykh, S., Rimoin, D. L., & Schievink, W. I. (2012). Connective tissue spectrum abnormalities associated with spontaneous cerebrospinal fluid leaks: a prospective study. European Journal of Human Genetics, 21(4), 386–390. https://doi.org/10.1038/ejhg.2012.191
The patients studied 50 patients with CSF leaks to assess the frequency of connective tissue disorders. Of these patients, only 9 had a connective tissue (EDS, Marfan's) and that for 7 of them there was a spontaneous leak. Based on this cohort, the authors concluded that spontaneous CSF leaks were associated with connective tissue disorders, suggesting that those with CSF leaks should be screened for EDS and Marfan's.
Summary by Kimberly Czotter
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NEUROLOGICAL MANIFESTATIONS OF hEDS
Tinkle, B., Castori, M., Berglund, B., Cohen, H., Grahame, R., Kazkaz, H., & Levy, H. (2017). Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome Type III and Ehlers-Danlos syndrome hypermobility type): Clinical description and natural history. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 48–69. https://doi.org/10.1002/ajmg.c.31538
This article discusses the presentation and prevalence of various neurological manifestations in hEDS patients: dysautonomia, migraine, temporomandibular joint dysfunction, idiopathic intracranial hypertension, Chiari malformation, and craniocervical instability. They recognize that their study is limited due to a lack of observational and general studies.
Summary by Kimberly Czotter
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EDS and Pregnancy
PREGNANCY OUTCOMES IN JHS AND EDS
Sundelin, H. E. K., Stephansson, O., Johansson, K., & Ludvigsson, J. F. (2016). Pregnancy outcome in joint hypermobility syndrome and Ehlers-Danlos syndrome. Acta Obstetricia et Gynecologica Scandinavica, 96(1), 114–119. Portico. https://doi.org/10.1111/aogs.13043
This study evaluated the Swedish Birth Registry from 1997-2011,to investigate EDS/HSD adverse birth complications: preterm labour, rupture of membranes, cesarean section, stillbirth, and more. There were 314 births compared to 1,247,864 controls. They found that those with EDS had higher risks of amniotomy and induction of labour, whereas there were no increased risks for those with HSD.
Summary by Kimberly Czotter
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LACTATION AND EDS
Francis, J., & Dickton, D. D. (2022). Considerations for lactation with Ehlers-Danlos syndrome: a narrative review. International Breastfeeding Journal, 17(1). https://doi.org/10.1186/s13006-021-00442-9
EDS can lead to complications during lactation; although there is a lack of information and guidance which this review attempts to improve. This review discusses EDS subtypes, symptoms, considerations, and potential risks during lactation and breastfeeding. Using research on non-EDS patients, they discuss GI distress, fatigue, chronic pain, injuries, subluxations/dislocations, and skin fragility.
Summary by Kimberly Czotter
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PREGNANCY AND BIRTH WITH hEDS
Pezaro, S., Pearce, G., & Reinhold, E. (2018). Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond. British Journal of Midwifery, 26(4), 217–223. https://doi.org/10.12968/bjom.2018.26.4.217
This article reviews the information available in 2018 regarding hEDS and pregnancy, birth, and postpartum. They also address the role of midwifery. *Much of the research included uses pre-2017 hEDS diagnostic criteria*
Summary by Kimberly Czotter
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EDS and the Respiratory System
hEDS PATIENTS AND INSPIRATORY MUSCLE FUNCTION
" Reychler, G., Liistro, G., Piérard, G. E., Hermanns‐Lê, T., & Manicourt, D. (2018). Inspiratory muscle strength training improves lung function in patients with the hypermobile Ehlers–Danlos syndrome: A randomized controlled trial. American Journal of Medical Genetics Part A, 179(3), 356–364. Portico. "
The researchers used a randomized controlled trial to investigate the inspiratory muscle strength in hEDS patients and the effect of training these muscles over 6 weeks to improve strength lung function and exercise capacity. The hEDS patients had reduced baseline strength of these muscles, and the authors found that training these muscles improved walking distance, expiratory volume, and sniff nasal inspiratory pressure.
Summary by Kimberly Czotter
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SLEEP APNEA AND JHS
" Sedky, K., Gaisl, T., & Bennett, D. S. (2019). Prevalence of Obstructive Sleep Apnea in Joint Hypermobility Syndrome: A Systematic Review and Meta-Analysis. Journal of Clinical Sleep Medicine, 15(2), 293–299. https://doi.org/10.5664/jcsm.7636"
The authors argue that those with hEDS have a higher risk of obstructive sleep apnea (OSA) because of connective tissue abnormalities. They evaluated 7 studies regarding EDS and OSA finding that those with EDS have OSA at a rate 6 times higher than in the general population even in those with a normal BMI.
Summary by Kimberly Czotter
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PRESCRIPTION BURDEN FOR RESPIRATORY AND GI MEDICATION IN EDS PATIENTS
Bascom, R., Dhingra, R., Francomano, C. A., & Schubart, J. R. (2021). A case–control study of respiratory medication and co‐occurring gastrointestinal prescription burden among persons with Ehlers–Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. Portico.
This study looks at 10 years of prescription claim data to find the use of respiratory and GI medication in EDS women. They found that when compared to controls, EDS patients had a higher prescription rate of: inhaled corticosteroids, oral steroids, H1-antihistamines, short-acting and long-acting beta agonists, decongestants, leukotriene modifiers , muscarinic antagonists, and co-occurring prescriptions.
Summary by Kimberly Czotter
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EDS AND HSD: REVIEW OF RESPIRATORY ISSUES AND MANAGEMENT
Chohan, K. et al. (2021). A review of respiratory manifestations and their management in Ehlers-Danlos syndromes and hypermobility spectrum disorders. Chronic Respiratory Disease, 18, 147997312110253. https://doi.org/10.1177/14799731211025313
This review consisted of a literature search for EDS, HSD, and respiratory (pulmonary) conditions. They found that respiratory conditions were common in EDS patients and included: asthma, sleep apnea, dyspnea, hemothorax, pneumothorax, dysphonia, and reduced muscle function of the respiratory system. There conditions were not common in HSD populations. They found that most treatments used a conservative, and non-surgical approach.
Summary by Kimberly Czotter
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EDS and the Skin
EDS and skin involvement.
SKIN CHANGES IN hEDS
Hermanns-Lê, T., Piérard, G. E., Manicourt, D., & Piérard-Franchimont, C. (2016). Clinical and Ultrastructural Skin Alterations in the Ehlers-Danlos Syndrome, Hypermobility Type. Dermatology - Open Journal, 1(1), 22–26. https://doi.org/10.17140/drmtoj-1-107
This review covers the basics behind EDS and different skin symptoms and pathologies related to the diagnosis including: stretchy skin, velvety skin, atrophic scars, and delayed wound healing. They discuss different ultrastructural components in the skin of hEDS patients such as collagen flowers.
Summary by Kimberly Czotter
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EDS and the Urogenital System
Kidneys, bladder, and genitals.
EDS AND HSD: PELVIC AND UROGENITAL COMPLICATIONS
Gilliam, E., Hoffman, J. D., & Yeh, G. (2019). Urogenital and pelvic complications in the Ehlers‐Danlos syndromes and associated hypermobility spectrum disorders: A scoping review. Clinical Genetics, 97(1), 168–178. Portico.
The authors conducted a review of studies on various subtypes of Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder and their relationship to urogenital pathologies. They found that EDS and HSD were related to increased incidence of urinary, renal, pregnancy, and gynecological problems.
Summary by Kimberly Czotter
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EDS AND HSD: HIGH RATE OF PELVIC COMPLICATIONS IN WOMEN
Glayzer, J. E., McFarlin, B. L., Castori, M., Suarez, M. L., Meinel, M. C., Kobak, W. H., Steffen, A. D., & Schlaeger, J. M. (2021). High rate of dyspareunia and probable vulvodynia in Ehlers–Danlos syndromes and hypermobility spectrum disorders: An online survey. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. Portico. https://doi.org/10.1002/ajmg.c.31939
The researchers conducted an online survey to examine vulvodynia and dyspareunia in 1,146 women with EDS/HSD. They also found that a majority reported these issues which correlated to comorbid conditions including: IBS, fibromyalgia, TMJ dysfunction, migraine, interstitial cystitis, and MCAS. Those reporting dyspareunia also said they had fibroids, endometriosis, genital lacerations, ovarian cysts, and/or abdominal or pelvic scars. As women with EDS/HSD reported vulvodynia at a rate 6x higher than in the regular population, the authors suggest that patients are screened for these conditions.
Summary by Kimberly Czotter
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GYNECOLOGICAL AND REPRODUCTIVE HEALTH OF hEDS WOMEN
Hugon-Rodin, J., Lebègue, G., Becourt, S., Hamonet, C., & Gompel, A. (2016). Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type ehlers-danlos syndrome: a cohort study. Orphanet Journal of Rare Diseases, 11(1). https://doi.org/10.1186/s13023-016-0511-2
This study of 386 women with hEDS evaluated reproductive and gynecological symptoms by using a standardized questionnaire and medical consultation. They found the following complaints in higher than average incidence: menorrhagia (76%), dysmenorrhea (72%), dyspareunia (43%), spontaneous abortion (28%), and multiple spontaneous abortion (13%). They found that some women were quite sensitive to hormonal changes, with increasing symptoms: during puberty, before menstruation, with oral contraception, and during postpartum. Both endometriosis prevalence and and cesarean section (14.6%) were similar to rates in the normal French population. * This study was conducted before the 2017 updated criteria *
Summary by Kimberly Czotter
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