Understanding the Elusive Disease 

You're laying in the recovery room after surgery and your head is spinning. Your world is a foggy place and all you know is, you hurt. In the midst of this confusion, your doctor pops in and says, "great news! We found the reason for your pain. You've got Endometriosis!" When the groggy feeling lifts and you start to regain your strength, you wonder, "What on earth is Endometriosis?!" 

Part I: The Disease 

One of the most common gynecological complaints, Endometriosis affects an estimated 77 million women and teens worldwide¹. According to the Endometriosis Research Center, it is a leading cause of infertility, chronic pelvic pain and hysterectomy. 

With Endometriosis, the tissue that normally lines the inside of the uterus (the endometrium) is found outside of the uterus, in other areas of the body. These implants respond to normal hormonal commands each month and break down and bleed. However, unlike the endometrium, these implants have no way of leaving the body. The result is internal bleeding, degeneration of blood and tissue shed from the growths, inflammation of surrounding areas, expression of irritating enzymes and formation of scar tissue. Depending on the location of the growths, interference with the reproductive organs, bowels, bladder, intestines and other areas of the pelvic cavity can occur. Though uncommon, Endometriosis has even been found in the lungs, lodged in the skin, and at other extrapelvic sites - including the brain.

Though advances are continually being made in the treatment realm, so much about Endometriosis remains a mystery. Infallibly, we know that Endometriosis has the potential to cause debilitating pain. What we don't know is what causes the disease - and how to definitively cure it. 

Why do some women develop Endometriosis and not others?

There are several theories, none of which have been absolutely proven, including: 

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."² 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 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.³

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

Latrogenic Transplantation - the accidental transference of Endometriotic tissue from one site to another during surgery. Highly uncommon today due to advanced surgical techniques. 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.

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.⁴

Immunology - according to Dr. Paul Dmowski of the Institute for the Study & Treatment of Endometriosis, "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 Southwestern⁵ published groundbreaking study results regarding this theory 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 and 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, 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." ⁶

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.⁷

Multiple Etiologies - experts like Dr. Robert Albee, Medical Director of the Center for Endometriosis Care, believe that it may actually be "a combination of several factors." 

While there is no absolute cure, there are several treatment methods, which can enable a patient to live well - in spite of her Endometriosis. 

Symptoms vary from patient to patient, but hallmark signs of Endometriosis include chronic or intermittent pelvic pain, dysmenorrhea (painful menstruation is not normal), difficulty conceiving, dyspareunia (painful intercourse), abdominal pain or cramping, gastrointestinal problems such as nausea, vomiting, diarrhea or constipation throughout your cycle, and urological symptoms such as bladder or kidney pain and urinary frequency or retention. Women with Endometriosis also report a higher incidence of non-specific symptoms such as fatigue and allergies. 

While the disease affects 1 out of 5 women, the staggering delay in diagnosis is an astounding 9 years. Younger women and teens, in particular, who present with symptoms are often dismissed and told they have pelvic inflammatory disease (PID) or that they are "too young" to have Endometriosis. In truth, Endometriosis has been found in infants⁸ and in menopausal women. 

A true diagnosis of Endometriosis can only be confirmed through surgery like a laparoscopy. Symptoms, physical findings and diagnostic tests like MRIs, CT scans and ultrasounds can be helpful, but the only way to determine if Endometriosis is present is to obtain tissue samples during surgery. 

Recent studies indicate that women with Endometriosis may have a slightly greater risk of developing cancer of the breast or ovaries and a greater risk of cancers of the blood and lymph systems, including non-Hodgkin's lymphoma. Researchers caution that the cause of the relationship is unclear. The association may be due to drugs or surgery used to treat the condition rather than Endometriosis itself, and only women with the most severe form of the disease may have the excess risk, according to a report in the American Journal of Obstetrics & Gynecology.⁸

According to lead study author, Dr. Louise Brinton of the Cancer Epidemiology and Genetics Division of the National Cancer Institute in Bethesda, Maryland, the results are "provocative in suggesting that women with Endometriosis may experience elevated risk of certain cancers." In the study of 20,686 Swedish women hospitalized for Endometriosis, the women had a 20% greater risk of developing cancer overall, particularly of the breast, ovaries and the blood and lymph cells, during an 11-year period. The women actually had a lower risk of cancer of the cervix. "The Endometriotic tissue and its surroundings will be enriched in growth factors and cytokines that might have a deleterious effect on the growth regulation of other cells, some of which may be in distant organs - for example, breast tissue," Brinton wrote. The growth factors might act as carcinogens, thus promoting cancer.¹⁰

There are other possible explanations as well. Women with Endometriosis are more likely take certain drugs, such as progestagins, and are more likely to have had their ovaries or uterus removed, another factor that influences hormone levels and possible cancer risk. It is also possible that women with Endometriosis may be screened more often for breast cancer and are therefore more likely to be diagnosed with the disease. Endometriosis has also been linked to a lack of physical activity and to exposure to the environmental contaminant, dioxin. These factors may be to blame for the cancer risk, rather than Endometriosis. 

Findings of a survey conducted on 4,000 Endometriosis patients in the United States and Canada¹¹ have indicated possible links to other serious medical conditions as well, including a 9.8% incidence of melanoma, compared with 0.01% in the general population, a 26.9% incidence of breast cancer, compared with 0.1% in the general population; and an 8.5% incidence of ovarian cancer, compared with 0.04% in the general population. Women with Endometriosis who participated in the survey also had a greater incidence of autoimmune conditions and Meniere's disease.

Endometriosis can impact every aspect of a woman's life: her schooling or career, her social life, her relationships and interactions with others, her ability to care for herself or her family, and ever her ability to have children. However, there is hope on the horizon. More women have taken charge of their own healthcare, educating their doctors about the disease and refusing to settle for less than the best treatment of their Endometriosis; more physicians are beginning to recognize the far-reaching effects this enigmatic disease has on their patients; more researchers are exploring new treatments and beginning to better understand Endometriosis. In the future, Endometriosis may not have to affect our daughters the way it affected us. 

Part II: Getting an Accurate, Early Diagnosis

The medical discipline that primarily addresses Endometriosis is Gynecology. A woman or teen experiencing pelvic pain at any point in her cycle should seek the assistance of a Gynecologist who takes her complaints seriously and investigates the source of her pain - at the onset of symptoms. Ideally, anyone who suspects they might have the disease should consult with an Endometriosis specialist, to avoid delay in diagnosis and inadequate treatments. 

Endometriosis symptoms can easily be confused for several other conditions, including adenomyosis ("Endometriosis Interna"), appendicitis, ovarian cysts, bowel obstructions, ovarian cancer, colon cancer, diverticulitis, ectopic pregnancy, fibroid tumors, pelvic inflammatory disease and Endometritis. It is imperative to note that Endometriosis is NOT an infection or a sexually transmitted disease. 

When seeing your Gynecologist for diagnosis and treatment, it is a good idea to bring along a list of your symptoms. Keeping a "pain journal" is an ideal way to track your daily experiences and relay them to your physician. 

While we still don't understand how and why some women get the disease or how to definitively cure it, some believe that we can take preventive measures against it in the following ways: 

• 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 an early 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(1) 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 similar devices can cause retrograde menses. 

A patient who has or suspects she might have Endometriosis should choose a specialist who will be a partner in her healthcare and assist her in choosing the most effective treatment options for her case; educate herself thoroughly and stay up to date on research; and keep in touch with others who understand and can share ideas and experiences about the disease.

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.

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