Endometriosis is a disease affecting an estimated 5 million women and teens in the United States alone, with millions more worldwide.⁽¹⁾  In some cases, the disease can have devastating effects; rendering a woman or adolescent unable to care for herself or her family, attend school or social functions, maintain her career or personal obligations.  Endometriosis affects not only the patient but can impact everyone around her.

Though advances are continually being made in the treatment realm,⁽²⁾ so much about Endometriosis remains a mystery.  Infallibly, we know that Endometriosis has the potential to cause debilitating pain in some women.  What we still don'tknow is what causes the disease - and how we can definitively cure it.

Why do some women develop Endometriosis and not others?  There are several theories, none of which have been absolutely proven.

The "Backflow" theory:
Dr. John Sampson's theory of retrograde menstruation, formulated in 1921.  Dr. Sampson contended that "during menstruation, a certain amount of menstrual fluid is regurgitated, or forced backward, from the uterus through the fallopian tubes and showered upon the pelvic organs and pelvic lining."⁽³⁾  There has been evidence to support Dr. Sampson's theory; however, studies have shown that many women experience retrograde menstruation and have evidence of a "tipped" uterus - yet not all women will develop Endometriosis.  His theory also fails to explain the presence of Endometriosis in such remote areas as the lungs, skin, lymph nodes, breasts and other areas; nor does this theory account for the rare cases of men who were discovered to have the disease.⁽⁴⁾

Transplantation theory:
Purports that the disease is spread through the lymphatic and circulatory systems via bloodflow.  This would explain Endometriosis in most sites.

Iatrogenic Transplantation ( "Doctor-Caused"):
The accidental transference of Endometriotic tissue from one site to another during surgery.  Highly uncommon today, due to advanced surgical management.  Also does not explain the presence of the disease to begin with.

Coelomic Metaplasia:
Drs. Ivanoff and Meyer's theory that "certain cells, when stimulated, can transform themselves into a different kind of cell."  This would explain the presence of the disease in absence of menses, and further, the rare presence of Endometriosis in men.⁽⁴⁾

Heredity:
Promising theory that patients with relatives who have Endometriosis may be genetically predisposed to developing it themselves.  This theory was suggested as early as 1943, with current research underway by Oxegene researchers at the University of Oxford.⁽⁵⁾

Immunology:
According to Dr. Paul Dmowski of The Institute for the Study and Treatment of Endometriosis,⁽⁶⁾ "two different arms of the immune system may be involved in the development of Endometriosis.  Cell-mediated immunity, in which specific immune cells fight disease, and humoral immunity, in which antibodies are formed to attack antigens."  Studies by Dr. Dmowski and others suggest that migrating Endometriotic tissue affects women who have "deficient cell mediated immunity." In women without the deficiency, the transplanted cells are destroyed.

Genetic Makeup:
Dr. Serdar E. Bulun (currently with the University of Chicago) and his team of researchers at the University of Texas Southwestern⁽⁷⁾ published groundbreaking study results in the February 1997 Journal of Clinical Endocrinology & Metabolism.  Dr. Bulun revealed that his research had shown an unusual estrogen-synthesizing enzyme, called aromatase, being expressed in the endometrial tissue of women with the disease.  This was allowing the wayward tissues to implant themselves in a woman’s reproductive tract and nearby organs.  In a further twist, the researchers uncovered that as this enzyme is induced by large amounts of prostaglandins in the area, the tissue makes its own estrogen - thus promoting its own further growth.

Endocrine Disruptors:
Endometriosis has been linked to exposure to environmental contaminants such as dioxin.

Anatomic Abnormalities:
In addition to the "tipped uterus"/retrograde theory of Dr. Sampson, investigators have been researching other anatomic distortions or abnormalities as a precursor to Endometriosis.  In one such study, researchers concluded that the depth and volume of the cul-de-sac ("Pouch of Douglas") differs in patients with Endometriosis with or without deep lesions as compared to women with a healthy pelvis (or with diseases other than Endometriosis).  In the outcome of the study, ⁽⁸⁾ authors noted: "reduced Douglas pouch depth and volume in women with deep Endometriosis suggests that such lesions develop not in the rectovaginal septum but intraperitoneally and that burial by anterior rectal wall adhesions creates a false bottom, giving an erroneous impression of extraperitoneal origin."

Liver Disorders:
Endometriosis is known to be estrogen-dependant.  Some believe that liver disorders hold the key in predisposing a woman to the disease.  The liver regulates and removes estrogen from the body through a series of processes; if, for whatever reason, the liver begins failing to remove the estrogen, symptoms such as chronic fatigue and allergies (common in Endometriosis) can appear.  In a further conundrum, studies have also shown that the liver is a major target for TCDD [dioxin] and is severely affected by the chemical; TCDD can cause extensive necrosis of the liver in rabbits; one of the main toxic effects of TCDD in the rat and rabbit is damage to the liver; and that a significant amount of persons exposed to dioxin have enlarged liver and impairment of liver functions.⁽⁹⁾

More Than Just One Cause?
Experts like Dr. Robert Albee, Medical Director of the Center for Endometriosis Care,⁽¹⁰⁾ believe that it may actually be "a combination of several factors."

Correcting Anatomic Problems:
Assuming that an ante- or retroverted uterus causes backflow, or that a malformed cul-de-sac allows the formation of the disease, surgically correcting such problems may decrease the incidence of Endometriosis.  This has never been scientifically proven.

Use of Oral Contraceptives, Beginning at a Young Age:
This theory of prevention holds that low dose birth control pills, taken from an early age, will reduce the proliferation of the endometrium as well as the flow and duration of menses.  However, at least one study⁽¹¹⁾ has shown that long term use of oral contraceptives actually increases the risk of Endometriosis.  In addition, no studies have been done on the long term effects of the extended use of synthetic hormones, especially in young women.

Exercise:
Exercise can reduce estrogen levels, sometimes leading to lighter and less painful periods.  In a study in the Journal of the American Medical Association, Cramer et al. noted that women who began exercising vigorously at an early age were less likely to develop Endometriosis.  Supported or refuted - either way, exercise can relieve symptoms for some women.

Avoiding Certain Procedures or Devices:
Assuming again that the retrograde theory holds true, procedures that cauterize, abrade or puncture the cervix, uterus, tubes and/or vagina should be avoided.  In addition, some believe that tampons, cervical caps, menstrual sponges, diaphragms and the like can cause retrograde menses.

• Choose an Endometriosis specialist who will be a partner in your healthcare and assist you in choosing the most effective treatment option for your case;
• Educate yourself thoroughly and stay up to date on research; and
• Keep in touch with others who understand and can share ideas and experiences with you.

References:
1) "Endometriosis: Frequently Asked Questions," Endometriosis Research Center, www.endocenter.org
2) "Endometriosis 2000 & Beyond: the Future of Research & Treatment"
3) "Coping with Endometriosis," Weinstein, Kate.  Addison Wesley ISBN 0-201-19810-x.
4) "Endometriosis in the male," AmSurg 1985 Jul;51(7):426-30 (ISSN: 0003-1348) by Martin JD Jr; Hauck AE; "Endometriosis of the male urinary system: a case report," J Urol 1980 Nov;124(5):722-3 (ISSN: 0022-5347) by Schrodt GR; Alcorn MO; Ibanez J; "Endometriosis of the urinary bladder in a man with prostatic carcinoma," Cancer 1979 Apr;43(4):1562-7 (ISSN: 0008-543X) by Pinkert TC; Catlow C; Straus R; "Endometriosis of the bladder in a male patient," J Urol 1971 Dec;106(6):858-9 (ISSN: 0022-5347) by Oliker AJ; Harris AE; physician correspondence with the Endometriosis Research Center, 2000.
5) OXEGENE is a world-wide research study which aims to find the genes responsible for causing Endometriosis, based at the Nuffield Department of Obstetrics & Gynaecology at the University of Oxford.  For more information visit www.medicine.ox.ac.uk/ndog/oxegene/oxegene.htm
6) Paul Dmowski, MD, Director, Institute for the Study & Treatment of Endometriosis (ISTE), 2425 West 22nd Street, Oak Brook, IL 60523, Ph. 630/954-0054.  www.endometriosisinstitute.com/
7) Serdar Bulun, MD, Director of Reproductive Endocrinology & Molecular Genetics, University of Chicago at IL, 820 S. Wood St., M/C 808, Chicago, IL  60612, Ph. 312/996-8197.
8) "Deep endometriosis conundrum: evidence in favor of a peritoneal origin," Fertil Steril 2000 May;73(5):1043-6 (ISSN: 0015-0282) by Vercellini P; Aimi G; Panazza S; Vicentini S; Pisacreta A; Crosignani PG.
9) "Liver Health & Endometriosis," Julia Chang, M. Sc.
10) The Center for Endometriosis Care, 1140 Hammond Drive, Bldg F Suite 6230, Atlanta, GA 30328, Ph. 877/212-9900, www.centerforendo.com/
11) "Oral contraceptive use and risk of endometriosis," Br J Obstet Gynaecol, Jul 1999, 106(7) p695-9 (ISSN: 0306-5456) by Parazzini F, Di Cintio E, Chatenoud L, et al.

Copyright © by Heather C. Guidone.   All rights reserved.  Do not reproduce without express permission.