Ask Me About My Uterus
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Thanks also to Nancy and Charles Konarski for loving my brother as if he were your own. And to my brother, who is brilliant, and funny, and kind, and whom I love more than he will ever know.
To the medical professionals in the book and those who are not: you are working in a system that isn’t working. It’s not working for you and it’s not working for your patients. I implore you to ask yourselves if there is something you can do from your vantage point to better advocate for your patients and for your colleagues, to support and encourage one another across disciplines, to get out of the silos in which you operate, to find and foster connections, and to give appreciable weight not just to the science of medicine, but to its art. You may have seen yourself, your words, and your actions or inactions in this book, not necessarily because they were you, but because you see yourself in these conversations, in these hospitals and operating rooms. If you are waiting for a patient to walk into your office and force you to shift your paradigm, don’t. The change has to come from you first.
To those in the book’s pages whose names and identities have been changed or otherwise obscured, but who no doubt recognize themselves: we’re all just hobbling through life, and may we all strive to hobble with more awareness, more compassion, and less fear.
Lastly, to my dog, Whimsy—who is too good for this world, too pure.
Abby Norman is a science writer and editor. Her work has been featured in the Rumpus, Independent, Paste, Medium, Atlas Obscura, Seventeen, Quartz, Cosmopolitan, and Lady Science/The New Inquiry. As a patient advocate and speaker, she has been on conference faculty at the Endometriosis Association of America, Stanford University’s Medicine X conference, and received health literacy training through the Dartmouth Institute. She has been interviewed by Forbes, New York Times, Glamour, Bustle, Huffpost Live, and a number of podcasts and international radio programs. She is currently a senior science editor at Futurism and the host of Let Me Google That on Anchor.fm. She lives on the coast of Maine with her dog, Whimsy.
NOTES
Chapter 1
In the 1940s, a group of researchers: James D. Hardy, Harold G. Wolff, and Helen Goodell, “Studies on Pain: Discrimination of Differences in Intensity of a Pain Stimulus as a Basis of a Scale of Pain Intensity,” Journal of Clinical Investigation 26, no. 6 (1947): 1152–1158.
So that’s exactly what they did: J. D. Hardy, H. G. Wolff, and H. Goodell, “Studies on Pain: A New Method for Measuring Pain Threshold. Observations on Spatial Summation of Pain,” Journal of Clinical Investigation 19, no. 4 (1940): 649–657.
The results of the study: J. D. Hardy and C. T. Javert, “Studies on Pain: Measurements of Pain Intensity in Childbirth,” Journal of Clinical Investigation 28, no. 1 (1949): 153–162.
Of the research that was done: B. Noble, D. Clark, M. Meldrum, H. ten Have, J. Seymour, M. Winslow, and S. Paz, “The Measurement of Pain, 1945–2000,” Journal of Pain and Symptom Management 29, no. 1 (2005): 14–21.
Many of my peers: Patient Protection and Affordable Care Act, 42 U.S.C.§m18001 et seq. (2010) SEC. 2714, Extension of Dependent Coverage.
In June 2005, Harper’s ran: Biss’s article was titled “The Pain Scale.”
Chapter 2
“My ovaries became the center of my universe”: Gilda Radner, It’s Always Something (New York: Simon and Schuster, 1989).
“Gilda cried,” Wilder recalled: Gene Wilder, “From the PEOPLE Archives: Gene Wilder’s Tearful Goodbye to Wife Gilda Radner,” People, posted August 30, 2016, http://people.com/movies/gene-wilders-tearful-goodbye-to-wife-gilda-radner, originally published in the print edition of People in 1991, two years after Radner’s death.
When I finished reading her memoir: Gilda Radner, It’s Always Something (New York: Simon and Schuster, 1989), audiobook.
The symbolism was based in: Edina Gradvohl, “The Toad and the Uterus: The Symbolics of Inscribed Frogs,” Sylloge Epigraphica Barcinonensis, 2012, www.raco.cat/index.php/SEBarc/article/view/264048.
It was all supposedly explained by: Edward Shorter, From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era (New York: Free Press, 1993).
This development came in part: J. M. Charcot, Clinical Lectures on the Diseases of the Nervous System, vol. 3 (London: New Sydenham Society, 1877), ebook.
They were an integral component: Jean Martin Charcot, Lectures on the Localisation of Cerebral and Spinal Diseases, translated by Walter Baugh Hadden (London: New Sydenham Society, 1883).
“If this be a female, and notably selfish…”: Susan Wells, Out of the Dead House: Nineteenth-Century Women Physicians and the Writing of Medicine (Madison: University of Wisconsin Press, 2012).
Humoring me with a more thorough investigation: Josef Breuer and Sigmund Freud, Studies on Hysteria (Lexington, KY: Forgotten Books, 2012).
In 1962, when she was seventeen years old: Karen Armstrong, The Spiral Staircase (New York: Anchor Books, 2005).
I was sitting on the couch at Cass’s: Chris Carter, The X-Files, Fox, broadcast on WFVX-LD, Bangor, 1993, written by Darin Morgan, Glen Morgan, James Wong, Frank Spotnitz, Vince Gilligan, and Howard Gordon, directed by R. W. Goodwin, Rob Bowman, Kim Manners, and David Nutter. The show ran on the Fox network, but for several years in the early 2000s it was syndicated to both the Sci Fi Channel and TNT.
Shortly before his retirement in 2012: David Redwine’s talk was in 2011 at the foundation’s 2nd Annual Scientific and Surgical Symposium. It can be viewed in its entirety at Endopaedia, http://endopaedia.info/origin39.html.
If you put “endometriosis” into PubMed: “MEDLINE/PubMed Resources Guide,” U.S. National Library of Medicine, National Institutes of Health, https://www.nlm.nih.gov/bsd/pmresources.html.
The theory that uterine tissue: P. J. van der Linden, “Theories on the Pathogenesis of Endometriosis,” Human Reproduction 11, Suppl. 3 (1996): 53–65.
Some studies cite an incidence of as little: A. Kim and G. Adamson, “Endometriosis,” Global Library of Women’s Medicine, July 2008, http://editorial.glowm.com/?p=glowm.cml/section_view&articleid=11.
Many of these studies obtained their data: R. D. Kempers, M. B. Dockerty, A. B. Hunt, and R. E. Symmonds, “Significant Postmenopausal Endometriosis,” Surgery, Gynecology & Obstetrics 111 (1960): 348.
In her speech at the Worldwide Endo March: Jhumka Gupta, “Endometriosis, Social Pathologies, and Public Health,” speech at Worldwide Endo March, Washington, DC, March 19, 2016. The full text of this speech is available on the Endometriosis Foundation of America’s website at https://www.endofound.org/endometriosis-social-pathologies-and-public-health.
The fetus had endometriosis: Mike Schuster and Dhanya A. Mackeen, “Fetal Endometriosis: A Case Report,” Fertility and Sterility 103, no. 1 (2015): 160–162.
Chapter 3
Sybil—the woman with sixteen personalities: The miniseries was written by Flora Rheta Schreiber and Stewart Stern and directed by Daniel Petrie for Lorimar Productions, 1976.
It was a name given to her: Flora Rheta Schreiber, Sybil (Chicago: Regnery, 1973).
In her book Sybil Exposed: Debbie Nathan, Sybil Exposed: The Extraordinary Story Behind the Famous Multiple Personality Case (New York: Free Press, 2012).
Another drug commonly given to women: John A. Sours, “Addiction to Daprisal,” Journal of the American Medical Association 205, no. 13 (1968): 940.
Practically every adult: Young Frankenstein, written by Gene Wilder, directed by Mel Brooks, Gruskoff/Venture Films, Crossbow Productions, and Jouer Limited, 1974.
Chapter 4
Harry Harlow, a behaviorist: Gregory A. Kimble, Norman Garmezy, and Edward Zigler, Principles of General Psychology (New York: John Wiley and Sons, 1980).
I remember reading: Deborah Blum, Love at Goon Park: Harry Harlow and the Science of Affection (New York: Basic Books, 2011).
Joseph Campell’s archetype: Joseph Campbell, The Hero with a Thousand Faces (Cleveland: World, 1949).
Chapter 5
Even before it had a name:
Cecilia Tasca, Mariangela Rapetti, Mauro Giovanni Carta, and Bianca Fadda, “Women and Hysteria in the History of Mental Health,” Clinical Practice and Epidemiology in Mental Health 8 (2012): 110–119.
Eighteen case studies: Sigmund Freud, “The Aetiology of Hysteria,” in The Standard Edition of the Complete Psychological Works of Sigmund Freud, vol. 3, (1893–1899): Early Psycho-Analytic Publications (London: Hogarth Press, 1962), 187–221.
“I would without another thought…”: Sigmund Freud and Philip Rieff, Dora: An Analysis of a Case of Hysteria (New York: Collier Books, 1993).
True conversion disorder: “Conversion Disorder,” National Organization for Rare Disorders (NORD), https://rarediseases.org/rare-diseases/conversion-disorder.
In fact, some research suggests: “Somatization Disorder,” Harvard Health, www.health.harvard.edu/mind-and-mood/somatization-disorder.
Chapter 6
Take this clinical portrait: J. D. Martin Jr. and A. E. Hauck, “Endometriosis in the Male,” American Surgeon 51, no. 7 (1985): 426–430.
Another more recent case involved: F. I. Jabr and V. Mani, “An Unusual Cause of Abdominal Pain in a Male Patient: Endometriosis,” Avicenna Journal of Medicine 4, no. 4 (2014): 99–101.
His doctors hypothesized: Masaharu Fukunaga, “Paratesticular Endometriosis in a Man with a Prolonged Hormonal Therapy for Prostatic Carcinoma,” Pathology—Research and Practice 208, no. 1 (2012): 59–61.
The study that provided the touted: Allen J. Wilcox, David Dunson, and Donna Day Baird, “The Timing of the ‘Fertile Window’ in the Menstrual Cycle: Day Specific Estimates from a Prospective Study,” British Medical Journal 321, no. 7271 (2000): 1259–1262.
When a woman breastfeeds: K. I. Kennedy, M. H. Labbok, and P. F. A. Van Look, “Lactational Amenorrhea Method for Family Planning,” International Journal of Gynecology & Obstetrics 54, no. 1 (1996): 55–57.
“A deep, dark and continuous…”: Irvine Loudon, “Deaths in Childbed from the Eighteenth Century to 1935,” Medical History 30, no. 1 (1986): 1–41.
It might seem like an extremely high number: Greenberg Quinlan Rosner, “Survey Reveals Confusion About Menstruation Abounds,” Association of Reproductive Health Professionals, May 22, 2006, www.arhp.org/modules/press/SURVEY-REVEALS-CONFUSION-ABOUT-MENSTRUATION-ABOUNDS--/15.
Recent research from JAMA: Y. Tsugawa, A. B. Jena, J. F. Figueroa, E. J. Orav, D. M. Blumenthal, and A. K. Jha, “Comparison of Hospital Mortality and Readmission Rates for Medicare Patients Treated by Male vs Female Physicians, Journal of the American Medical Association Internal Medicine 177, no. 2 (2017): 206–213.
The National Human Rights Coalition: Kounteya Sinhai, “70% Can’t Afford Sanitary Napkins, Reveals Study,” Times of India, January 23, 2011, http://timesofindia.indiatimes.com/india/70-cant-afford-sanitary-napkins-reveals-study/articleshow/7344998.cms.
A researcher and academic named Sara Read: Read’s article appeared in Early Modern Women 3 (2008): 1–25.
“By all love’s soft, yet mighty powers…”: John Wilmot Rochester and David M. Vieth, The Complete Poems of John Wilmot (New Haven, CT: Yale Nota Bene, 2002).
As the legend goes: Joshua J. Mark, “Hypatia of Alexandria,” Ancient History Encyclopedia, September 2, 2009, www.ancient.eu/Hypatia_of_Alexandria.
“A review of 1,382…”: G. Bruinvels, R. J. Burden, A. J. McGregor, K. E. Ackerman, M. Dooley, T. Richards, and C. Pedlar, “Sport, Exercise and the Menstrual Cycle: Where Is the Research?” British Journal of Sports Medicine 51 (2017): 487–488.
A major study showing: Katherine A. Liu and Natalie A. Dipietro Mager, “Women’s Involvement in Clinical Trials: Historical Perspective and Future Implications,” Pharmacy Practice 14, no. 1 (2016): 708.
Methandrostenolone, for example, also known as Dianabol: D. L. Freed and A. J. Banks, “A Double-Blind Crossover Trial of Methandienone (Dianabol, CIBA) in Moderate Dosage on Highly Trained Experienced Athletes,” British Journal of Sports Medicine 9, no. 2 (1975): 78–81.
Anecdotal evidence suggests: J. Simons and M. P. Carey, “Prevalence of Sexual Dysfunctions: Results from a Decade of Research,” Archives of Sexual Behavior 30, no. 2 (2001): 177–219.
Chapter 7
“He calls me Little Miss Neverwell…”: Hilary Mantel, Giving Up the Ghost: A Memoir (London: Fourth Estate, 2013).
American physician Joe Vincent Meigs: J. V. Meigs, “Endometriosis: Etiologic Role of Marriage Age and Parity—Conservative Treatment,” Obstetrics and Gynecology 2, no. 1 (1953): 46–53.
“As women have the same physiology…”: Kate Seear, The Makings of a Modern Epidemic: Endometriosis, Gender and Politics (Farnham, UK: Ashgate, 2014).
The eugenics vibe: J. V. Meigs, “Endometriosis—Its Significance,” Annals of Surgery 114, no. 5 (1941): 866–874.
“Only a fraction of women affected…”: K. R. Mitchell, R. Geary, C. A. Graham, J. Datta, K. Wellings, P. Sonnenberg, N. Field, et al., “Painful Sex (Dyspareunia) in Women: Prevalence and Associated Factors in a British Population Probability Survey,” British Journal of Gynecology, January 25, 2017.
In her review of literature on endometriosis: Carolyn Carpan, “Representations of Endometriosis in the Popular Press: ‘The Career Woman’s Disease,’” Atlantis: Critical Studies in Gender, Culture & Social Justice 27, no. 2 (2003): 32–40.
It was called Dexamyl: N. Rasmussen, “America’s First Amphetamine Epidemic, 1929–1971: A Quantitative and Qualitative Retrospective with Implications for the Present,” American Journal of Public Health 98, no. 6 (2008): 974–985.
Many women alive today: Ruth Hubbard, The Politics of Women’s Biology (New Brunswick, NJ: Rutgers University Press, 1990).
this particular framing of endometriosis: Catherine Kohler Riessman, “Women and Medicalization: A New Perspective,” Social Policy 14 (1983): 3–18.
The most oft-cited study: Diane E. Hoffmann and Anita J. Tarzian, “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain,” Journal of Law, Medicine & Ethics 29 (2001): 13–27.
It’s one of New York City’s: Christopher Gray, “Inside the Union Club, Jaws Drop,” New York Times, February 11, 2007, www.nytimes.com/2007/02/11/realestate/11scap.html.
Chapter 9
For reasons that I can’t explain: Bruce Springsteen, “I’m on Fire,” on the album Born in the U.S.A., produced by Jon Landau, Chuck Plotkin, and Steven Van Zandt, Columbia, 1985.
How far we had come: Alex Looseley, “Corning and Cocaine: The Advent of Spinal Anaesthesia,” Grand Rounds 9 (2009): L1–L4.
Almost every night of my life: Christian de Duve, Vital Dust: Life as a Cosmic Imperative (New York: HarperCollins, 1995).
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