In all of the many books and webpages I’ve read since my Endometriosis diagnosis, I’ve read the same stats over and over.  1 in 10 people born with a uterus will develop Endometriosis.  176 million affected worldwide.  But where did those stats come from? When were they last updated? How do they track it?

After scouring the web, I finally found some of the sources of those figures, but nothing that actually gives me a current number of diagnoses around the world today:

But the term “women” is no longer an accurate reflection regarding the statistics. There are non-binary, transgender, others who do not identify as women, and even cis-men who suffer with Endometriosis.

10%-15%

In September, 2014, C Mehedintu, MN Plotogea, S Ionescu, and M Antonovici published “Endometriosis Still a Challenge.” J Med Life. Sep 15, 2014; 7(3): 349–357.  The article states that “10% – 15% of women of reproductive age suffer from Endometriosis.“

2%-10%

The Florida Hospital does not cite their source, but states that 5.5 million women in North America have Endometriosis, and that it effects 2% – 10% of women in their reproductive age. Pit those figures against those presented by the Endometriosis Foundation of America, which state 8.5 million women in North America have Endometriosis.  See how frustrating it can be to pin down a figure?

1 in 10 women

Endometriosis UK credits their statistics of 1 in 10 women have Endo to an April, 2009 article by Rogers PA, D’Hooghe TM, Fazleabas A, et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46.

July, 2007: Rogers’ article references an article which states the costs of treating Endometriosis in 2002 in the U.S. along was approximately $22 Billion, citing between $1,023 – $2,801 annually for each patient.  This figure took into account “productivity loss.” To quote the author, “There is a need for more and better-designed studies that carry out longitudinal analyses of patients until the cessation of their symptoms or that model the chronic nature of endometriosis.” Simoens S, Hummelshoj L, D’Hooghe T; Endometriosis: cost estimates and methodological perspective. Hum Reprod Update. 2007 Jul-Aug; 13(4):395-404.

June, 1997: Rogers’ article references an article which states that 1 in 10 women will develop Endometriosis. Eskenazi B, Warner ML; Epidemiology of Endometriosis. Obstet Gynecol Clin North Am. 1997 Jun;24(2):235-58.

5%-10%

October, 1999:  An article cites that Endometriosis effects between 5% – 10% of women. Caroline Wellbery, M.D.; Diagnosis and Treatment of Endometriosis; Georgetown University School of Medicine, Washington, D.C.; Am Fam Physician. 1999 Oct 15;60(6):1753-1762.

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Since most of these figures in the past 20 years have all been relatively similar, all of this research led my curiosities to “When was Endo first discovered?”

Ivo Brosens (Professor Emeritus of the Catholic University Leuven, Belgium) and Giuseppe Benagiano (of the Sapienza University of Rome’s Department of Gynecology-Obstetrics & Urology) wrote an article in 2011 entitled, “Endometriosis, a Modern Syndrome.”  They state that Thomas Cullen was the first to accurately describe and classify Endometriosis.  Further research shows Mr. Cullen’s discovery was back in 1908, over 100 years ago! We’ll get there…

For comparison:

In 1880, Malaria parasites were discovered in a patient’s bloodstream.  During the building of the Panama Canal and the occupation of Cuba, the U.S. upped it’s efforts to control the disease and successfully “eliminated” it from the U.S. by the efforts of the Center for Disease Control in 1951. It took 70 years from discovery to cure.

In 1912, Measles had become a problem in the States and had to be reported by all physicians. In the first decade after, 6,000 deaths were reported.  A vaccine was created in 1962 and made available; however, Measles wasn’t considered “eliminated” from the U.S. until the year 2000.  That’s 88 years.

Conclusion

So, in conclusion, what have I found today?  That different sources all have different estimates of how many “women” have Endometriosis today.  It has varied between 2% – 15% either have, or will develop, Endometriosis.   To quote the National Institute of Health, “Because some women might have Endometriosis, but do not have symptoms, it is difficult to know exactly how many women have the condition.”  The world may never know just how many carry this disease inside of our bodies.

The one thing I am certain of since today’s assignment: too many people have Endometriosis.  Better treatment, and  a cure, must be developed.  And I know steps are being taken by various agencies around the globe to do just that.

Resources:

American Family Physician

Center for Disease Control

Endometriosis Foundation of America

Endometriosis UK

Florida Hospital

US National Library of Medicine

World Endometriosis Society

*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from a fellow WordPress blogger, Elizabeth, “How about some percentages and recent stats on Endometriosis?”  So research began!  Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa