In the United States, there are an estimated 6.5 million women living in endometriosis.1-3 Worldwide, approximately 1 in 10 women have endometriosis.4 Endometriosis is often under-recognized and under-diagnosed, and on average, women with endometriosis wait 7.5 years to receive a formal diagnosis.5 Whether you think you have endometriosis, or you’ve already been diagnosed, here’s a guide to the basics of endometriosis.
What is endometriosis?
The tissue that lines the uterus is known as endometrium. Endometriosis is a chronic condition in which endometrial-like tissue grows outside of the uterus. Most commonly, this abnormal tissue grows on the fallopian tubes, ovaries, outer surface of the uterus, and other parts of the pelvis. Each month, endometrial tissue thickens and breaks with the menstrual cycle, which can lead to pain, inflammation, adhesions, ovarian cysts, scar tissue, and blockage of the fallopian tubes.1,2,6Read more. What causes endometriosis?
The exact cause of endometriosis is unknown. However, some common theories on the causes of endometriosis include retrograde menstruation (the backward flow of menstrual blood in the body), genetic factors, hormone irregularities, previous surgery, and immune system dysfunction.2,6-10Read more. How is endometriosis diagnosed? What can patients expect?
Surgery (such as a laparoscopy) is the only definitive way to diagnose endometriosis. 11,12 However, other common diagnostic methods include a medical and symptom history, a pelvic exam, and imaging (such as an ultrasound, MRI, or CT). Your healthcare provider may also perform a differential diagnosis to rule out conditions that are similar to endometriosis, or to determine if you are experiencing multiple health conditions.11Read more. How do I know if I have endometriosis? What are the symptoms?
Surgery (such as a laparoscopy) is the only definitive way to diagnose endometriosis.11,12 However, common symptoms include:2,5,6
Who gets endometriosis?
It is a common myth that endometriosis only impacts older women. In fact, women who are of reproductive age (roughly ages 25-40) are the most commonly affected by the condition, and nearly 70% of all women with endometriosis started experiencing symptoms before 20 years old. 1,2 Although the exact cause of endometriosis is still unknown some women have a higher chance of developing endometriosis, based on certain risk factors. Some common risk factors for endometriosis include:1,2
Very low body weight
Having your first menstrual period at age 11 or younger
Family history of endometriosis
Various environmental exposures
Having immune system irregularities.
What are the different forms of endometriosis?
Endometriosis can present in a variety of ways. Endometriosis is typically classified based on where it appears in the body, as well as pathological factors. Some common forms of endometriosis are superficial peritoneal endometriosis, ovarian endometriomas, endometriotic nodules, and deep infiltrating endometriosis. Importantly, the form of endometriosis does not always correlate to the resulting symptoms. For example, someone with superficial peritoneal endometriosis may experience more or less pain than someone else with deep infiltrating endometriosis. It’s also possible to have more than one form of endometriosis.13,14Read more. What are the different stages of endometriosis?
The current staging method of endometriosis is based on guidelines outlined by the American Society for Reproductive Medicine.15 The stages range from I (one) to IV (four), with I being the mildest and IV being the most severe. Endometriosis is staged based on the location, depth, and extent of endometriosis lesions, the size and presence of any endometriomas, the severity of any adhesions present, and any endometriosis-related blockages within the fallopian tubes. Like the form of endometriosis, stages do not necessarily correlate with the symptoms experienced. Endometriosis can also be staged using the Endometriosis Fertility Index, which predict the fertility of a woman with endometriosis.16Read more. How is endometriosis treated and managed?
Currently, there is no definitive cure for endometriosis. However, several treatment options are available to reduce symptoms, reduce pain, and/or promote fertility. Your healthcare provider will recommend treatment options based on your age, the symptoms you are experiencing, the severity of your endometriosis, and whether or not you wish to have children. Common treatments for endometriosis include:1,2,5,6,8
Can endometriosis be cured?
Currently, there is no definitive cure for endometriosis. However, there are several treatments available to reduce and manage the symptoms of endometriosis, Currently, experts are researching the true cause of endometriosis in an effort to find a cure. While a hysterectomy may improve symptoms, hysterectomy is not considered a definitive cure for endometriosis.17,18Read more. Does endometriosis cause infertility?
The impact on fertility as a result of endometriosis can vary significantly from person to person. Endometriosis is often associated with, or causes, infertility, and estimates suggest that 20-50% of women with infertility have endometriosis. However, not every woman with endometriosis will be infertile, and many endometriosis patients can become pregnant and carry pregnancues to term. Also, several endometriosis treatments are designed to treat infertility problems.1,19Read more.
Schrager S, Falleroni J, Edgoose J. Evaluation and treatment of endometriosis. American Academic of Family Physicians. 2013; 87(2), 107-113. Available from: https://www.aafp.org/afp/2013/0115/p107.pdf. Accessed March 17, 2018.
Endometriosis. U.S. Department of Health and Human Services: WomensHealth.gov. https://www.womenshealth.gov/a-z-topics/endometriosis. Published March 16, 2018. Accessed March 17, 2018.
Buck Louis GM, Hediger ML, Peterson CM, et al. Incidence of endometriosis by study population and diagnostic method: the ENDO Study. Fertil Steril. Aug 2011; 96(2), 360-365. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3143230/. Accessed March 17, 2018.
Eisenberg VH, Weil C, Chodick G, Shalev V. Epidemiology of endometriosis: a large population‐based database study from a healthcare provider with 2 million members. BJOG: An International Journal of Obstetrics & Gynaecology. 2017;125(1). doi:https://doi.org/10.1111/1471-0528.14711.
Endometriosis Fact Sheet. The American College of Obstetricians and Gynecologists. https://www.acog.org/about_acog/news_room/~/media/newsroom/millionwomanmarchendometriosisfactsheet.pdf. Published 2014. Accessed April 23, 2018.
Endometriosis. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656. Published March 9, 2018. Accessed March 17, 2018.
Sourial S, Tempest N, Hapangama DK. Theories on the pathogenesis of endometriosis. International Journal of Reproductive Medicine. 12 Feb 2014. Available from: https://www.hindawi.com/journals/ijrmed/2014/179515/. Accessed March 25, 2018.
What Causes Endometriosis? U.S. National Library of Medicine: PubMed Health. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0072687/. Published October 19, 2017. Accessed March 25, 2018.
Burney RO, Giudice LC. Pathogenesis and pathophysiology of endometriosis. Fertil Steril. 20 Jul 2012; 98(3). Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3836682/. Accessed March 25, 2018.
Diagnosing Endometriosis. PubMed Health: U.S. National Library of Medicine. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0072683/. Published October 19, 2017. Accessed April 23, 2018.
Laparoscopy. The American College of Obstetricians and Gynecologists. https://www.acog.org/Patients/FAQs/Laparoscopy. Published July 2015. Accessed April 23, 2018.
Donnez J, Squifflet J. Complications, pregnancy and recurrence in a prospective series of 500 patients operated on by the shaving technique for deep rectovaginal endometriotic nodules. Human Reproduction. 1 Aug 2010; 25(8), 1949-1958.
Hsu AL, Khachikyan I, Stratton P. Invasive and non-invasive methods for the diagnosis of endometriosis. Clin Obstet Gynecol. Jun 2010; 53(2), 413-419. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2880548/. Accessed March 24, 2018.
American Society of Reproductive Medicine. Revised American Society for Reproductive Medicine classification of endometriosis: 1996. Fertility and Sterility. 5 May 1997; 67(5), 817-21.
Adamson GD, Pasta DJ. Endometriosis fertility index: The new, validated endometriosis staging system. Fertility and Sterility. Oct 2010; 94(5), 1609-15. Available from: https://www.fertstert.org/article/S0015-0282(09)03714-5/pdf. Accessed April 23, 2018.
Jacobson TZ. Potential cures for endometriosis. Annals of the New York Academy of Sciences. 14 Mar 2011; 1221(1), 70-74.
Current Research Priorities in Endometriosis: Stacey Missmer, PhD. Endometriosis Foundation of America. https://www.endofound.org/current-research-priorities-in-endometriosis-stacey-missmer-phd. Published 2013. Accessed April 4, 2018.
Practice Committee of the American Society for Reproductive Medicine. Endometriosis and infertility: A committee opinion. Fertil Steril. Sep 2012; 98(3), 591-8.