- Home
- » Guides
- » Endometriosis
Endometriosis
You can manage this mysterious disease
Endometriosis is a puzzling condition for which there is no known cause or cure. But a variety of treatment options exist to help you manage this chronic problem and comfortably carry on with your life. Endometriosis occurs when the tissue that usually lines the uterus (which is called endometrium) grows in other parts of the body, most commonly in the pelvic area -- on the ovaries, the ligaments that support the ovaries, and fallopian tubes -- although it can also grow elsewhere.
Pronunciation
en-doh-mee-tree-OH-sis
Synonyms & Abbreviations
Misplaced growths of endometrial tissue are sometimes referred to as endometrial plants or implants. Endometriosis is sometimes called "endo" for short by women with the condition.
Detailed Description
Like the lining of your uterus, misplaced endometrial tissue responds to the hormones of the menstrual cycle. But unlike the lining of your uterus, this tissue has nowhere to go and does not leave your body. It thickens each month, breaks down, and causes bleeding, often resulting in menstrual cramps, pain, irritation, and the formation of scar tissue. As the disease progresses, adhesions (fibrous bands that connect structures that shouldn't be connected) may form. These are not cancerous, nor are they life-threatening, but they can cause a great deal of discomfort, and even infertility.
How Common Is Endometriosis?
No one knows for sure how many women have endometriosis: It is estimated that it occurs in 10% to 15% of menstruating women between the ages of 15 and 45. But it is hard to know for sure since the disease is difficult to diagnose and because some women never exhibit any symptoms. In fact, studies show that the average woman with endometriosis consults about five doctors before being diagnosed with the condition because it so closely resembles other medical conditions. Which is why it is so important for you to learn more about endometriosis if you suspect your might have it; being an informed patient will help your doctor make a quicker diagnosis, and allow you to partner with your doctor as you develop a plan to manage your condition.
According to the American College of Obstetricians and Gynecologists, as many as 30% of infertile women may have endometriosis, but keep in mind that more than 50% of infertility patients with minimal to mild cases of endometriosis are able to become pregnant. In fact, pregnancy can lessen the severity of symptoms and slow the growth of misplaced endometrial tissue. But, of course, pregnancy should never be considered a treatment for this condition.
What You Can Expect
There are several treatment options for endometriosis, including pain medication, hormonal therapy, surgery, and alternative treatment, but it is important to remember that this condition is chronic and requires long-term management. You and your doctor will choose a course of treatment based on your age, the location of the endometriosis, its severity, your child-bearing plans, family history, and, of course, your personal preferences.
Established Causes
No one knows what causes endometriosis.
Theoretical Causes
While no one knows what causes endometriosis, there are several theories:
- According to one theory, some of the menstrual tissue flows the wrong way during menstruation, heading back up through the fallopian tubes, where it implants in the abdomen and grows. This theory is called the retrograde menstruation theory or transtubal migration theory. Some experts believe that all women experience some "backwards" menstruation every month, accounting for the perimenstrual symptoms, and that women with endometriosis suffer an immune system problem or hormonal problem that allows this tissue to grow.
- Another theory is that the lymph system or circulatory system spreads endometrial tissue to other parts of the body.
- Because endometriosis seems to run in families, some medical experts suggest that a predisposition towards endometriosis may be genetic.
- Yet another theory suggests that endometrial cells might have grown in the wrong place while you were developing in your mother's uterus.
- Research conducted by the Endometriosis Association revealed a link between exposure to dioxin (TCCD), a toxic chemical byproduct of pesticide manufacturing, and the development of endometriosis in monkeys. No similar study has examined humans exposed to dioxin, but this may also be a cause of endometriosis.
Risk Factors
General risk factors for endometriosis include:
- Short menstrual cycles (fewer than 27 days)
- Periods that last 7 days or more
- History of the disease in your immediate family
- A tilted (retroflexed) uterus
- Incapacitating menstrual cramps (primary dysmenorrhea)
Risk factors are traits or behaviors that may make you statistically more likely than others in the general population to have a certain condition. They are not necessarily "causes" of the condition.
Symptoms
The symptoms of endometriosis depend on where the misplaced (ectopic) endometrial tissue deposits and develops. Some women with severe endometriosis have no symptoms; while others with minimal or mild endometriosis experience acute pain. And many women don't experience any symptoms until they've had the disease for several years. Although endometriosis is most often associated with pelvic pain, abnormal periods, and infertility, there are other symptoms. Keep an eye out for the following:
- Heavy menstrual bleeding
- Incapacitating menstrual cramps (dysmenorrhea)
- Pain in the lower abdomen and pelvic area
- Painful sexual intercourse (dyspareunia) or tenderness following sex
- Abdominal swelling
- Pain during bowel movements
- Blood in your urine
- Rectal bleeding during menstruation
- Lower abdominal pain during urination
- Difficulty getting pregnant (infertility)
- Miscarriage
Conditions That May Be Mistaken for Endometriosis
Although constant abdominal or pelvic pain is a classic symptom of endometriosis, it can also be caused by the following conditions:
- Incapacitating menstrual cramps (
- Ectopic pregnancy
- Pelvic inflammatory disease (PID)
- Ovarian tumors
- Uterine tumors
- Irritable bowel syndrome
- Inflammatory bowel disease (Crohn's disease or ulcerative colitis)
- Appendicitis
- Ulcers
- Urinary tract infection (UTI)
- Interstitial cystitis (an inflammatory disease of the bladder muscle)
How Endometriosis Is Diagnosed
If you suspect you might have endometriosis, look for a knowledgeable doctor. The Endometriosis Association (800-992-3636 or www.endometriosisassn.org) can help you locate one in your area and offers a special information kit to help you with diagnosis. Though your doctor may be able to feel endometrial implants during a pelvic exam, the only way he or she can definitively diagnose endometrosis is by performing a laproscopy.
During this procedure, the doctor inserts a fiber-optic viewing tube (a laproscope) into your abdomen through a small incision just below your navel so he or she can see into your abdomen. In some cases, the doctor may decide to remove a small sample of the tissue (biopsy) for examination under a laboratory microscope to make the diagnosis. This procedure usually requires general anesthesia.
Since endometriosis is usually visible to the naked eye, imaging techniques are not very helpful for locating and evaluating the extent of endometrial growth. These techniques, which include ultrasound scans, computer enhanced X-rays (computed tomography or CT), and magnetic resonance imaging (MRI) are especially useful if you have ovarian cysts or nodules (lumps or tumors) in the rectal wall.
Goals of Treatment
Although there is no cure for endometriosis, most women with endometriosis find relief from the discomfort and infertility associated with this condition through pain medication, hormonal therapy, surgery, alternative treatment, or a combination of these therapies.
Whether your goal is to overcome endometriosis so you can have a baby or to slow the progression of the disease to alleviate the discomfort, you, your doctor, and your partner (if you're considering pregnancy) have several options to consider. Your choices will depend on your symptoms, pregnancy plans, age, and the extent of the disease.
Treatment Overview
The following methods are all used to treat endometriosis.
Pain medication
Over-the-counter pain relievers and mild narcotic pain relievers often alleviate the severity of minor symptoms. You may want to try the following:
- Acetaminophen (Tylenol)
- Ibuprofen (Advil, Motrin, and Nuprin)
- Naproxen (Aleve)
- Acetaminophen with codeine (Tylenol #3, Empirin, and Codeine #4)
Hormonal therapy
Hormonal therapy in the form of birth control pills is the most common treatment for endometriosis. The goal is to stop ovulation, slowing the growth of the endometrial tissue. The most commonly prescribed hormones are
- Oral contraceptives (Ortho-Novum, Ortho Cyclen, Trilevlen, and Triphasil)
- Medroxyprogesterone (Depo-Provera)
- Danazol, a testosterone derivative (Danocrine)
- Gonadotropin-releasing hormone drugs or GnRH agonists, such as goserelin acetate (Zoladex), leuprolide acetate (Lupron, Lupron-Depot, and Lupron Depot-Ped), or nafarelin acetate (Synarel)
Unfortunately, drug treatment doesn't cure endometriosis; the disease is suppressed only for as long as you take the hormones.
Surgery
If you have moderate to severe endometriosis, surgery may be necessary. However, like drug therapies, surgical removal of the implants is usually only temporary; endometriosis will recur in most women.
Conservative surgeries include scraping, cutting, cauterizing, or lasering the growths during laparoscopy (a minor procedure with a tiny abdominal incision) or laparotomy (a more extensive procedure with a full incision and longer recovery period). These surgeries are intended to remove or destroy the adhesions, relieve pain, and increase fertility. After having misplaced endometrial tissue removed, 40% to 70% of women are able to get pregnant; drug treatment may improve this rate.
Once believed to be the only cure for endometriosis, a hysterectomy (the removal of the uterus) is a radical procedure that is not guaranteed to eliminate endometreosis. Doctors only perform hysterectomies on women whose severe abdominal or pelvic pain couldn't be treated with drugs and aren't planning to become pregnant. Since a hysterectomy, if accompanied by removal of the ovaries, induces menopause immediately, you will probably be treated with hormone replacement therapy (HRT) after surgery if you choose this option.
Activity & Diet Recommendations
In addition to seeking medical help, you may find that a few lifestyle changes bring you some relief. Try exercise: Feeling fit often makes it easier to handle stress, which in turn makes it easier to cope with pain. Try to eat well and practice relaxation techniques to help you manage the stress that can sometimes worsen the discomfort of endometriosis.
Quality of Life
If you detect and treat endometriosis early, the chances that it will respond to minor surgery and that you'll be able to have children is good. Pregnancy and menopause -- when ovulation naturally halts -- have been found to alleviate the symptoms of endometriosis.
Special Considerations
Pregnancy
The American Society for Reproductive Medicine has established criteria for classifying endometriosis as minimal, mild, moderate, or severe. Doctors can also perform tests to determine whether endometriosis is affecting your fertility. If you'd like to have children and have been diagnosed with endometriosis, you should not postpone pregnancy, since infertility is a common complication as this disease progresses and because women with endometriosis have higher rates of ectopic pregnancy and miscarriage.
Supplements
- Take a multivitamin and-mineral supplement. Some studies suggest that vitamins, particularly B vitamins, help relieve endometriosis symptoms.
Relaxation
- The pain of endometriosis can cause stress and anxiety, which in turn make the pain worse, adding to the stress. A relaxation program can break this vicious cycle. Incorporate a stress management program into your life, such as meditation, biofeedback, visualizations, or massage therapy. Gentle exercise programs, including yoga and tai chi, can also relieve stress.
Lifestyle
- Information and emotional support can help you cope. Contact the Endometriosis Association, 8585 North 76th Place, Milwaukee, WI 53223; 800-992-3636. This organization sponsors 150 support groups around the country and publishes an informative newsletter and other materials.
Preventing Endometriosis
Endometriosis cannot be prevented, but having children before age 30 may decrease the risk of developing this disorder.
Self-Care Measures
- Take hot baths to help ease the pain.
- Sleep with a heating pad.
- Eat more fruits, vegetables, and beans. Their high fiber content helps reduce estrogen, which contributes to endometriosis. Fiber in plant foods binds with estrogen in the digestive tract and carries it out of the body in the stool.
- Pregnancy may temporarily ameliorate the course of this disease. But, of course, pregnancy should never be considered a treatment for this condition.
- Regular, moderate exercise releases endorphins, the body's own mood-elevating, pain-relieving compounds. It also reduces estrogen levels.
Websites & Organizations
The American College of Obstetricians and Gynecologists
409 12th Street
SW Washington, DC 20024-2188
Phone: 202-638-5577
American Medical Women's Association
801 N. Fairfax St., Suite 400
Alexandria, VA 22314
Voice mail: 703-838-0500
Fax: 703-549-3864
Email: info@amwa-doc.org
Atlanta Reproductive Health Centre
Digestive Disease National Coalition
507 Capitol Court, Suite 200
Washington DC 20002
Phone: 202-544-7497
American Society for Reproductive Medicine
2140 11th Avenue
South, Suite 200
Birmingham, AL 35205
Phone: 205-978-5000
Fax: 205-978-5005
Endometriosis Association
8585 North 76th Place
Milwaukee, WI 53223
Phone: 414-355-2200 or 800-992-3636
Fax: 414-355-6065
Fertility Research Foundation
1430 Second Avenue, Suite 103
New York, NY l0021
Phone: 212-744-5500
National Women's Health Resource Center, Inc.
120 Albany Street, Suite 820
New Brunswick, New Jersey 08901
Phone: 877-98-NWHRC (877-986-9472)
Email: NatlWHRC@aol.com
Resolve
5 Water Street
Arlington, MA 02174
Phone: 617-643-2424
Sources for This Article
Books
Balch, James F. and Balch, Phyllis A. Prescription for Nutritional Healing Garden City Park, NY: Avery Publishing, 1997.
Bennett, J. Claude and Plum, Fred. Cecil Textbook of Medicine, eds. Philadelphia: W. B. Saunders, 1996.
Fauci, Anthony J., et. al. Harrison's Principles of Internal Medicine, eds. New York: McGraw-Hill, 1998.
Hardman, Joel G. and Limbird, Lee E. Goodman and Gilman's The Pharmacological Basis of Therapeutics eds. New York: McGraw Hill, 1996.
Hurst, J. Willis. Medicine for the Practicing Physician eds. Stamford, CT: Appleton & Lange 1996.
Noble, John. Primary Care Medicine ed. St. Louis: Mosby, 1996.
Physicians' Desk Reference. Montvale, NJ: Medical Economics Co., 1998.
Rakel, Robert E. Conn's Current Therapy eds. Philadelphia: W.B. Saunders, 1998.
Taylor, Robert B. Family Medicine: Principles and Practice. New York: Springer-Verlag, 1998.
Tierney, LM, McPhee, SJ, and Papadakis, MA. Current Medical Diagnosis and Treatment eds. Stamford, CT: Appleton & Lange, 1998.
Articles
Balasch, J, Creus, M, Fabregues, F, Carmona, F, Ordi, J, Martinez-Roman, S, Vanrell, JA. "Visible and Non-visible Endometriosis at Laparoscopy in Fertile and Infertile Women and in Patients with Chronic Pelvic Pain: A Prospective Study." Hum Reprod. 11(2):387-91. Feb 1996.
Fernandez-Shaw, S, Kennedy, SH, Hicks, BR, Edmonds, K, Starkey,PM, Barlow, DH. "Anti-endometrial Antibodies in Women Measured by an Enzyme-linked Immunosorbent Assay." Hum Reprod. 11(6):1180-4. Jun 1996.
Grow, DR, Williams, RF, Hsiu, JG, Hodgen, GD. "Antiprogestin and/or Gonadotropin-releasing Hormone Agonist for Endometriosis Treatment and Bone Maintenance: A 1-year Primate Study." J Clin Endocrinol Metab. 81(5):1933-9. May 1996.
Hornstein, MD, Harlow, BL, Thomas, PP, Check, JH. "Use of a New CA 125 Assay in the Diagnosis of Endometriosis." Hum Reprod. 10(4):932-4. Apr 1995.
Lu, PY, Ory, SJ. "Endometriosis: Current Management." Mayo Clin Proc. 70(5):453-63. May 1995.
Miller, KA, Pittaway, DE, Deaton, JL. "The Effect of Serum from Infertile Women with Endometriosis on Fertilization and Early Embryonic Development in a Murine In Vitro Fertilization Model." Fertil Steril. 64(3):623-6. Sep 1995.
Ryan, IP, Taylor, RN. "Endometriosis and Infertility: New Concepts." Obstet Gynecol Surv. 52(6):365-71. Jun 1997.
Sangi-Haghpeykar, H, Poindexter 3rd, AN. "Epidemiology of Endometriosis among Parous Women." Obstet Gynecol. 85(6):983-92. Jun 1995.
Sutton, C. "Hysterectomy: A Historical Perspective." Baillieres Clin Obstet Gynaecol. 11(1):1-22. Mar 1997.
Vercellini, P, De Giorgi, O, Aimi, G, Panazza, S, Uglietti, A, Crosignani, PG. "Menstrual Characteristics in Women with and without Endometriosis." Obstet Gynecol. 90(2):264-8. Aug 1997.