Facts about endometriosis

These FACTS are produced by the World Endometriosis Society and the World Endometriosis Research Foundation and have been re-produced with permission.
These facts are current as of the date at the bottom of this page.

This section is particularly aimed at journalists, medical writers, bloggers, etc, who wish to make sure their facts about endometriosis are correct before they publish information about the disease*.

Endometriosis lesions*

Endometriosisis a disease in which tissue similar to the lining inside the uterus (called “the endometrium”), is found outside the uterus, where it induces a chronic inflammatory reaction that may result in scar tissue.  It is primarily found on the pelvic peritoneum, ovaries, in the recto-vaginal septum, on the bladder, and bowel.

In very rare cases it has been found on the diaphragm and in the lungs [1-2].

Endometriosis affects an estimated 1 in 10 women during their reproductive years (ie. usually between the ages of 15 to 49), which is approximately 176 million women in the world [3-4].

However, endometriosis can start as early as a girl’s first period and the menopause may not resolve the symptoms of endometriosis, especially if the woman has scar tissue or adhesions from the disease and/or surgery.

The symptoms of endometriosis include painful periods, painful ovulation, pain during or after sexual intercourse, abnormal bleeding, chronic pelvic pain, fatigue, and infertility, and can impact on general physical, mental, and social well being [1,5].   A general lack of awareness combined with a “normalisation” of symptoms results in a significant delay from when a woman first experiences symptoms until she eventually is diagnosed and treated [5].

There is no known cure and, although endometriosis can be treated effectively with drugs, most treatments are not suitable for long-term use due to side-effects [1,3]. Surgery can be effective to remove endometriosis lesions and scar tissue, but success rates are dependent on the extent of disease and the surgeon’s skills.

Pregnancy may relieve symptoms but is not a cure for the disease. Hysterectomy, with surgical removal of all the disease at the same time, may relieve symptoms, but is not a “definitive cure” either. Removal of the ovaries at the same time as a hysterectomy is performed increases the chances of pain relief but also results in an immediate menopause.

There is no known cause of endometriosis but it is highly likely that certain genes predispose women to develop the disease [6]. Thus, women have a higher risk of developing endometriosis if their mother and/or sister(s) are also affected [7]. It is also likely that environmental factors influence whether a woman is affected: for example, in a few papers it has been suggested that endometriosis is caused by exposure to dioxin (an environmental pollutant), although to date there is no proven link [8].

There are regular claims that women with endometriosis have a higher risk of developing ovarian cancer; however, this research is not definitive and the absolute risk is very, very small. Whereas endometriosis is not a known pre-cursor to cancer, in very rare isolated cases malignant transformation has been observed [9-10].

Even though endometriosis is associated with inflammation and immunological dysfunctions, it has not been proven itself to be an autoimmune disease [8].

Resources

There are national support organisations in many countries now. For a complete list see: http://endometriosis.org/support/

The World Endometriosis Society (WES) has organised 12 World Congresses on Endometriosis (WCE) since 1986. The 13th WCE takes place in Vancouver, Canada, 14 – 17 May 2017 (www.endometriosis.ca/wce2017).

The World Endometriosis Research Foundation (WERF) is the first global charity to foster research in endometriosis with an aim to improve knowledge and treatments through international multi-centre research according to standardised protocols. WERF is currently working with 62 centres in 25 countries.

Acknowledgments

* picture courtesy of Dan Martin MD

References
  1. Kennedy S, et al. ESHRE guideline for the diagnosis and treatment of endometriosisHuman Reprod 2005;20(10):2698-2704.
  2. Guidice LC. Endometriosis. Clinical Practice. N Engl J Med 2010;362(25):2389-98.
  3. Rogers PA, et al. Priorities for endometriosis research: recommendations from an international consensus workshopReprod Sci 2009;16(4):335-46.
  4. Adamson GD, et al. Creating solutions in endometriosis: global collaboration through the World Endometriosis Research Foundation. J of Endometriosis 2010;2(1):3-6.
  5. Nnoaham KE, et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countriesFertil Steril 2011;96(2):366-373.
  6. Painter JL, et al. Genome-wide association study identifies a locus at 7p15.2 associated with endometriosisNat Genet 2011;43(1):51-4.
  7. Moen MH and Magnus P. The familial risk of endometriosis. Acta Obstet Gynecol Scand 1993;72(7):560-4.
  8. Guo S-W, et al. Reassessing the evidence for the link between dioxin and endometriosis: from molecular biology to clinical epidemiology. Mol Hum Reprod 2009;15(10):609-24.
  9. Vigano P, et al. The relationship of endometriosis and ovarian malignancy: a review. Fertil Steril 2008;90(5):1559-70.
  10. Wiegand KC, et al. ARID1A mutations in endometriosis-associated ovarian carcinomas. N Engl J Med 2010;363(16):1532-43.
See also

Frequently asked questions about endometriosis
Myths and misconceptions in endometriosis
Downloadable PDF with FACTS about endometriosis

* If you require additional information

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