Women with Ehlers-Danlos

Did you know?

70% of people with EDS are assigned female at birth

70% of people with EDS have been told it's "all in their head"

97% of people with EDS have been told their issues are psychological. Not physical.

(Demmler et al., 2019)

Flexibility

The percentages provided fall in line with the long history of discrimination against women, especially in the medical field (Lippi et al., 2020). Chen and colleagues (2008) found that women had to wait longer than men in emergency rooms and were less likely to receive analgesia or opiates for pain equal to men’s pain. One study found that women are 7 times more likely to be misdiagnosed and sent home in the middle of a heart attack than men (Nabel, 2000), illustrating women’s dismissal and medical sexism. The medical and science communities are decades behind in fully understanding women as they are in understanding men. Not only are women treated as less important as illustrated in the examples above, but there is also a huge delay in gathering information on the actual anatomical workings of women in general. It was not until 2005 that the full structure of the clitoris was brought into awareness via an MRI (O’Connell et al., 2005). In 2019 the first publication of the clitoris’s full anatomy, histology, and nerve density appeared (Jackson et al., 2019). Finally, in 2022 the full extent of the clitoris’s nervous system was discovered (Peters et al., 2023), putting women at risk, such as one woman who had her nerves unknowingly severed during surgery (Sun, 2022). The statistics are staggering and continue to illustrate how female self-identified patients are more impacted than males. As humans, we have been incredibly uninterested in what is going on with women’s bodies until recently, or as Lynn Enright states, “woefully neglected” (Slawson, 2019). In the realm of visibility, women understand what it means to be dismissed and feel invisible; women are deserving of more care and concern (Hogue & Book, 2018).

Jorden, A. (2024). Capturing Women’s Biopsychosocial Experience of Living With Ehlers-Danlos Syndrome Through Photography (dissertation). ProQuest. Retrieved from https://www.proquest.com/docview/3201334426/580943EFDD44F80PQ/1?sourcetype=Dissertations%20&%20Theses.

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Resources:

Chen, E., Shofer, F., Dean, A., Hollander, J., Baxt, W., Robey, J., Sease, K., & Mills, A. (2008). Gender disparity in analgesic treatment of emergency department patients with acute abdominal pain. Academic Emergency Medicine, 15(5), 414–418. https://doi.org/10.1111/j.1553-2712.2008.00100.x

Demmler, J., Atkinson, M., Reinhold, E., Choy, E., Lyons, R., & Brophy, S. (2019). Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: A National Electronic Cohort Study and case–control comparison. BMJ Open, 9(11). https://doi.org/10.1136/bmjopen-2019-031365

Hogue, C., & Book, W. (2018). Women deserve better health care. Annals of Internal Medicine, 168(12), 885. https://doi.org/10.7326/m18-1258

Jackson, L., Hare, A., Carrick, K., Ramirez, D., Hamner, J., & Corton, M. (2019). Anatomy, histology, and nerve density of clitoris and associated structures: Clinical applications to vulvar surgery. American Journal of Obstetrics and Gynecology, 221(5). https://doi.org/10.1016/j.ajog.2019.06.048

Lippi, D., Bianucci, R., & Donell, S. (2020). Gender medicine: Its historical roots. Postgraduate Medical Journal, 96(1138), 480–486. https://doi.org/10.1136/postgradmedj-2019-137452

Nabel, E. (2000). Coronary heart disease in women — an ounce of prevention. New England Journal of Medicine, 343(8), 572–574. https://doi.org/10.1056/nejm200008243430809

O’Connell, H., Sanjeevan, K., & Hutson, J. (2005). Anatomy of the clitoris. Journal of Urology, 174(4 Part 1), 1189–1195. https://doi.org/10.1097/01.ju.0000173639.38898.cd

Peters, B., Uloko, M., & Isabey, P. (2023). (001) how many nerve fibers innervate the human clitoris? A histomorphometric evaluation of the dorsal nerve of the clitoris. The Journal of Sexual Medicine, 20(Supplement_1). https://doi.org/10.1093/jsxmed/qdad060.001

Slawson, N. (2019, December 18). “Women have been woefully neglected”: Does medical science have a gender problem? The Guardian. https://www.theguardian.com/education/2019/dec/18/women-have-been-woefully-neglected-does-medical-science-have-a-gender-problem

Sun, T. (2022, March 23). This woman is now a “clitoris advocate” after a harrowing, botched vagina surgery left her suicidal. New York Post. https://nypost.com/2022/03/23/this-woman-is-now-a-clitoris-advocate-after-a-harrowing-botched-vagina-surgery-left-her-suicidal/