Understanding Endometriosis
With Endometriosis, tissue like the lining of the uterus (the endometrium) is found in other areas of the body. These implants continue to respond to hormonal commands each month and break down and bleed. However, unlike the lining of the uterus which is discarded with menstruation, the tissue has no way of exiting the body. The result is internal bleeding, degeneration of blood and tissue shed from the implants, inflammation and irritation of the surrounding areas, formation of scar tissue and often, severe pain. Endometriosis is commonly found on the ovaries, tubes, bowels, bladder and surrounding pelvic organs, but has even been discovered in such remote places as the lungs, brain and under the skin.
Endometriosis can only be diagnosed through invasive surgery, and the average delay in diagnosis is a staggering 9 years. A patient may seek the counsel of 5 or more physicians before her pain is adequately addressed. Once diagnosed, it is not unusual for a patient to undergo several pelvic surgeries and embark on many different hormonal and medical therapies in an attempt to treat her symptoms. Unfortunately, there is no absolute cure for Endometriosis.
Endometriosis is a benign disease; however, recent studies indicate that women who have the disease may have a slightly increased 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 have the excess risk[5]. Endometriosis has also been linked to exposure to the environmental contaminant, Dioxin. This may be to blame for the cancer risk, rather than the Endometriosis.
Findings of one survey conducted on over 4,000 Endometriosis patients in the United States and Canada[6] indicated possible links to other serious medical conditions, 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.
While researchers remain unsure as to the definitive cause of the disease, there are several theories, including:
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. There has been evidence to support Dr. Sampson’s theory; however, studies have shown that most women experience retrograde menstruation and have evidence of a “tipped” uterus, yet not all women will develop the disease. His theory also fails to explain the presence of Endometriosis in such remote areas as the lungs, skin, lymph nodes, breasts and other areas.
Transplantation theory: Endometriosis is spread through the lymphatic and circulatory systems. This would explain Endometriosis in most sites.
Iatrogenic Transplantation-or “doctor caused:” the accidental transference of the Endometriosis tissue from one site to another during surgery. This is highly uncommon today due to advanced surgical management, and 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 menstruation, and further, the presence of the disease on the bladders of men who have undergone prostate removal and were treated with estrogens.
Heredity: popular theory that women with relatives who have the disease may be genetically predisposed to developing it themselves. This theory was suggested as early as 1943, and research is currently underway by Oxegene researchers at the University of Oxford[7] to study it further. Results released on a 2002 study showed that Endometriosis may have even deeper genetic roots than previously thought: Icelandic researchers found that “having a sister or mother who had Endometriosis increases your risk by fivefold. In addition, even having a second, third or fourth cousin with this disorder means your risk is greater than 50%.”[8]
Immunology: according to Dr. Paul Dmowski of The Institute for the Study and Treatment of Endometriosis[9], “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 Endometriosis tissue affects women who have “deficient cell mediated immunity.” In women without the deficiency, the transplanted cells are destroyed.
Genetic makeup: In 1997, a team of researchers at University of Texas Southwestern found another genetic link to the disease [10]. Dr. Serdar E. Bulun and his team found that some women’s genetic makeup determines their predisposition for contracting the disease. They also discovered that an unusual estrogen-synthesizing enzyme, called Aromatase, was expressed in the endometrial tissue of women with the disease but not in those without the disease. This enzyme allows the wayward tissues to implant themselves to a woman’s reproductive and nearby organs, and in a further twist, allows the tissue to make its own estrogen and promote its own further growth. On the basis of these findings, the team began conducting preliminary research on the use of Aromatase Inhibitors like Letrozole as a treatment for Endometriosis.
Dr. Redwine’s theory of Mulleriosis: World expert Dr. Redwine explains that Mullerian Duct of the fetus gives rise to the cells of the uterus, tubes, ovaries and peritoneum of the adult. He believes these Mullerian cells migrate along the pelvic wall and some get left behind. If the cells are endometrial, Endometriosis will arise.[11]
There are other theories being investigated. Some experts such as Dr. Robert Albee of the Center for Endometriosis Care in Atlanta, GA[12] believe that it may actually be “a combination of several factors.”
The amount of pain and potential for infertility associated with the disease is not related to the extent or size of the implants (“stage”). Some women with Endometriosis have no symptoms, others have debilitating pain, miscarriage and infertility. While Endometriosis can only be definitively diagnosed via pelvic surgery like the laparoscopy, some signs that may indicate Endometriosis include:
chronic or intermittent pelvic pain
dysmenorrhea (painful menstruation is not normal!)
infertility
miscarriage(s)
ectopic (tubal) pregnancy
dyspareunia (pain associated with sexual intercourse).
constipation, diarrhea, and/or abdominal cramping
rectal pain
blood in urine
tenderness around the kidneys
painful or burning urination
flank pain radiating toward the groin
urinary frequency, retention, or urgency
Fatigue, chronic pain, allergies and other immune system-related problems are also commonly reported complaints of women who have Endometriosis.
Endometriosis symptoms are somewhat non-specific, so it may masquerade as other conditions which need to be ruled out, including adenomyosis, appendicitis, ovarian cysts, bowel obstructions, colon cancer, diverticulitis, ectopic pregnancy, fibroid tumors, gonorrhea, inflammatory bowel disease, irritable bowel syndrome, ovarian cancer, and PID (pelvic inflammatory disease).
Often, younger women and teens who present to their healthcare providers with symptoms are dismissed and told they have PID or that they are too young to have Endometriosis. This is not the case. Endometriosis has been found in autopsies of infants[13] and in menopausal women. Endometriosis is indeed prevalent in the adolescent female population: far from the “rare” incidence once believed, studies have found that as many as 70% of teenagers with chronic pelvic pain had Endometriosis proven by laparoscopy.[14] Other reports indicate that as many as 41% of patients experienced Endometriosis pain as an adolescent.[15]
While there is no definitive cure for Endometriosis, treatments exist that can help assuage some or all of the symptoms temporarily. These include surgical intervention, alternative therapies, oral and injectible contraceptive therapy, over the counter and prescription pain killers, immune therapy, diet/nutrition, exercise and medications like gonadotropin-releasing hormone agonists (GnRH-a). GnRHs are drugs that suppress the implants by first stimulating the ovaries to produce more estradiol (the most potent form of estrogen) and then after 7-21 days of constant stimulation, shutting down the “messenger” hormones sent from the pituitary gland to the ovaries. The result is that the ovaries shut down, estradiol levels drop sharply and rapidly, and the patient ceases to ovulate or menstruate; a condition similar to that of menopause. Some women experience positive results with GnRH treatments, others do not. As with any treatment, each case will vary. Though the medications may temporarily shrink the lesions of Endometriosis, they will not shrink adhesions or scar tissue, which often play a part in the symptomatic pain of the disease. Common side effects that have been reported by women undergoing treatment include hot flashes, headaches, insomnia, vaginal dryness, decreased libido, depression, mood swings, fatigue, acne, dizziness, nausea, short term memory loss, diarrhea, hair loss, anxiety, and bruising at injection site. A growing movement is underway to prescribe empiric use of GnRH therapy in patients who have not undergone surgical diagnosis; however, organizations like the International Endometriosis Research Center have openly lobbied against this unorthodox approach.[16] Despite the perpetuation of myths by the less informed, pregnancy and hysterectomy are not cures for Endometriosis.
The most effective step an Endometriosis patient can take when dealing with this disease is to find a specialist who treats Endometriosis and pelvic pain specifically. Endometriosis is a serious disease, which requires serious treatment.
Despite the conundrum of Endometriosis, there is hope. Extensive research us underway for faster – and non-invasive – diagnostics as well as new treatments for Endometriosis. Legislative efforts have begun pushing the envelope to fund further studies and have brought awareness of the disease to the forefront of society. Women and girls with Endometriosis, and their loved ones, should seek the assistance of an Endometriosis organization to remain educated, empowered and encouraged where the disease is concerned.
References:
1, 2 – Alexandra Alger, “The Danger Within.” Forbes Magazine. December 13, 1999
3 – National Alliance of Breast Cancer Organizations, “Breast Cancer Basics.” http://www.nabco.org/index.php/39
4 – Delthia Ricks, “Survey Links Endometriosis To Some Cancers.” Newsday. April 1999
5 – American Journal of Obstetrics and Gynecology, 1997;176:572-579
6 – “Endometriosis Ups Cancer Risk,” Reuters, NY
7 – OXEGENE is a world-wide research study that aims to find genes responsible for causing Endometriosis. The study is based at the Nuffield Department of Obstetrics & Gynaecology in the University of Oxford http://www.medicine.ox.ac.uk/ndog/oxegene/oxegene.htm
8 – Colette Bouchez, “Genetic Links to Fertility-Related Disorder Revealed.” HealthScoutNews. Mar 5, 2002
9 – The Institute for the Study and Treatment of Endometriosis (ISTE), 2425 West 22nd Street, Oak Brook, IL 60523, Phone 630-954-0054, http://www.Endometriosisinstitute.com
10 – The Journal of Clinical Endocrinology and Metabolism, February 1997; Serdar E. Bulun, MD, Director, Division of Reproductive Biology, Northwestern University. http://www.medschool.northwestern.edu/obgyn/faculty/Bulun.htm
11, 13- David B. Redwine, MD, St. Charles Medical Center Endometriosis Treatment Program, Bend, Oregon – 800/486-6368, http://www.scmc.org/Endo.html
12 – Center for Endometriosis Care, 1140 Hammond Drive, Bldg F Suite 6230, Atlanta, GA 30328, 877-212-9900, http://www.centerforEndo.com
14 – Michael D. Birnbaum, MD, FACOG, FACE, “Incidence of Endometriosis. http://www.infertilityphysician.com/endometriosis/incidence.html
15- Dixie Farley, FDA/Office of Public Affairs, “On the Teen Scene: Endometriosis – Painful, but Treatable.” http://www.fda.gov/fdac/reprints/ots_endo.html
16-International Endometriosis Research Center. 630 Ibis Drive, Delray Beach, FL 33444. http://www.endocenter.org
