- Ehlers Danlos syndrome (EDS) is a connective tissue disorder that can affect skin, joints, and many tissues in the body by its effect on collagen (National Organization for Rare Diseases, 2017).
- There are not many available studies on any association between endometriosis and Ehlers Danlos. Heavy menstrual bleeding, irregular menstruation, and severe pain during menstruation are symptoms of Ehlers Danlos (Castori, 2012). One study noted that, while those with Ehlers Danlos experience many common symptoms of endometriosis such as painful periods and painful penetration, “endometriosis was not highly prevalent in this population” (Hugon-Rodin et al., 2016). Another study also notes that “only occasionally” are those symptoms “related to an underlying gynecologic disorder, such as endometriosis” (Castori, 2012). In a presentation to the Ehlers Danlos Society in 2018, Dr. Blagowidow cites 6-23% of those with EDS also have endometriosis.
- The incidence of Ehlers-Danlos syndrome is between 1 in 2500 and 1 in 5000 (Miklovic & Sieg, 2019). The incidence of endometriosis is 1 in 10 (Parasar, Ozcan, & Terry, 2017). There may be overlap in the conditions, but nothing definitive has been discovered associating it and endometriosis, aside from common symptoms.
- There are not many resources for treating the pelvic pain associated with Ehlers Danlos syndrome. NSAIDS, vitamin B1, magnesium, acupuncture, oral contraceptive pills, progesterone (pills or intrauterine device), and physical therapy are recommendations from Dr. Natalie Blagowidow (2018) to the Ehlers Danlos Society. You can read more about treatment options for endometriosis here.
References
Blagowidow, N. (2018). OB/GYN and EDS/HDS. Retrieved from https://www.ehlers-danlos.com/pdf/2018-annual-conference/N-Blagowidow-2018Baltimore-OB-GYN-and-EDS-HSD-S.pdf
Castori, M. (2012). Ehlers-danlos syndrome, hypermobility type: an underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular, and systemic manifestations. International Scholarly Research Notices, 2012. Retrieved from https://www.hindawi.com/journals/isrn/2012/751768/
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), 1-6. Retrieved from https://ojrd.biomedcentral.com/articles/10.1186/s13023-016-0511-2
Miklovic, T., & Sieg, V. C. (2019). Ehlers Danlos Syndrome. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK549814/
National Organization for Rare Diseases. (2017). Ehlers Danlos Syndromes. Retrieved from https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/#symptoms
Parasar, P., Ozcan, P., & Terry, K. L. (2017). Endometriosis: epidemiology, diagnosis and clinical management. Current obstetrics and gynecology reports, 6(1), 34-41. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5737931/#:~:text=Endometriosis%20affects%2010%E2%80%9315%25%20of,and%20reduced%20quality%20of%20life.