The Basics
- What is endometriosis?
- What causes endometriosis?
- What are the different types of endometriosis?
- Endometriosis and women: the statistics
- How does endometriosis affect women?
Diagnosis and Treatment
Empower Yourself
Endometriosis
Discuss all medical advice, diagnosis, and treatment with your healthcare provider.
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Endometriosis Resources
The Basics
What is endometriosis?
Endometriosis is a health problem that affects only women. The endometrium is the tissue that lines the uterus. In women with endometriosis, tissue that looks and behaves like the endometrium begins to grow in other places in the body. This mock endometrium is often found on the ovaries, behind the uterus, on the tissues that hold the uterus in place, or on the bowel or bladder. The unwanted tissue can be called growths, tumors, implants, lesions, or nodules.
This tissue rarely grows in other parts of the body, but has been found in the lung, on the arm or thigh, and in other locations. These growths or lesions respond to the menstrual cycle in the same way as the endometrium lining the uterus. Each month, the tissue builds up, breaks down, and sheds. This is the time when menstrual blood flows out of the uterus and leaves the body through the vagina. However, the blood and tissue shed from endometrial growths have no way of leaving the body. This causes internal bleeding, a breakdown of blood and tissue from the growths, and inflammation. These problems can cause pain, infertility, scar tissue, adhesions, and bowel problems, depending on where the lesions or growths are located.
Symptoms
- Very painful menstrual cramps
- Pain with periods that gets worse over time
- Chronic pain in the lower back and pelvis
- Pain during or after sex
- Intestinal pain
- Painful bowel movements or painful urination during menstrual periods
- Heavy and/or long menstrual periods
- Spotting or bleeding between periods
- Infertility (not being able to get pregnant)
- Fatigue
- Gastrointestinal problems (especially during menstruation)
- Diarrhea
- Constipation
- Bloating
What causes endometriosis?
Unfortunately, the causes of endometriosis are unknown. There are theories that link endometriosis to various causes, but none have been fully substantiated.
- The Retrograde Menstruation Theory is the most widely accepted theory on the causes of endometriosis. It suggests that during menstruation, some of the menstrual tissue backs up through the fallopian tubes and lodges in the abdomen, where it grows and goes through the same cycle that it would go through in the uterus. Some experts believe that all women experience this to an extent, but only in women with hormonal or immune problems will the tissue grow to the point of causing cause endometriosis.
- Another theory suggests that the endometrial material is dispersed throughout the body via the lymph or blood system. This is linked to a theory that suggests that there is a genetic factor, and women with a history of endometriosis in the family may be more susceptible. Again, this theory has not been confirmed.
- The Endometriosis Association discovered a link between exposure to dioxin, a toxic chemical byproduct of pesticide manufacturing or waste incineration and endometriosis. Among a colony of monkeys that had been exposed to dioxin, 79% developed endometriosis.
While the specific causes are unclear, there are certain factors that increase the likelihood that you can get endometriosis. You are more likely to get endometriosis if you:
- Started menstruating at an early age
- Have heavy periods
- Have periods that last more than 7 days
- Have a short monthly cycle (less than 27 days)
- Have a close relative with endometriosis
What are the different types of endometriosis?
- Endometrial implants: These small deposits are usually 1 to 2 mm in diameter, but they may be so small that they can be seen only with a microscope. They look like single dots or small clusters of dots. They may be clear, red, black, or white, depending on how old they are and in what stage of development they are. They are usually found on the surface of the peritoneum, which is the membrane that lines the abdominal and pelvic cavities.
- Endometrial nodules: These lumps vary in shape and size, but they are usually elongated and about 2 mm to 3 mm in length. They usually lie below the peritoneum, and they often infiltrate the underlying tissues. They are most commonly found in or near the ligaments of the uterus, in the pouch of Douglas (just above the cervix), and rectovaginal septum (between the rectum and vagina).
- Endometriomas: These are endometrial cysts that measure between 1 and 10 centimeters in diameter. They are found in or on the ovary. They are often referred to as "chocolate cysts" because they contain dark blood that has the consistency of melted chocolate.
Endometriosis and women: the statistics
- About 5 million women in the United States have endometriosis
- It affects about 8% to 10% of women of childbearing age
- Of women who are unable to conceive, untreated endometriosis causes infertility in 30%-40%.
How does endometriosis affect women?
Endometriosis can cause a great deal of pain, because when the endometrial material goes through the normal cycle, it has no way of leaving the body. This causes a build-up of this tissue. In areas where endometriosis occurs may certain chemicals may be secreted and irritate other nearby tissue, causing pain. Over time, endometrial tissue can grow and harden into nodules or bumps that look like individual organs.
Menstruation
During menstruation, women with endometriosis will feel more severe symptoms. Their periods usually lasts longer and flows more heavily. They may experience spotting or bleeding between periods, and will likely have severe cramps and back pain during menstruation. This pain is likely to get worse over time.
Birth Control
Birth control pills are sometimes used to ease some symptoms of endometriosis. They prevent endometrial growths and prevent the monthly cycle of the build-up and breakdown of the growths. Birth control pills may make a woman's period lighter, more steadier, and less uncomfortable.
Pregnancy
One of the most devastating possible effects of endometriosis for many women is infertility. Women with endometriosis are more likely to have trouble conceiving and studies have shown that they also have a greater likelihood of miscarrying. However, when women with endometriosis get pregnant, they often experience a remission in their symptoms.
Menopause
Menopause usually ends the symptoms of mild or moderate endometriosis. Even after surgery or menopause, however, a severe case of endometriosis can come back if the woman takes estrogen therapy, or if there is continued hormone production after menopause. Some studies suggest that women should not undergo hormone replacement for 3 to 9 months after hysterectomy and removal of the ovaries.
Diagnosis and Treatment
Diagnosis
If you are experiencing painful periods and you think you might have endometriosis, it is important to go see an OB/GYN immediately. The OB/GYN will take a history of your menstrual cycle and your symptoms. Things that will be discussed are:
- When your periods began
- When your symptoms began
- The regularity of your cycle
- History of endometriosis in your family
You may also want to keep a daily journal before you go to the OB/GYN. List your symptoms and when you experience them and be prepared to share this information with your doctor.
During your consultation, you may have a pelvic exam. This helps determine whether you have endometriosis. You may also have a vaginal ultrasound imaging test. While this test cannot detect the smallest forms of endometriosis, it will be able to detect endometriomas and other abnormalities that may contribute to your symptoms.
Laparoscopy: If your doctor concludes that you may have endometriosis, then he/she will conduct a laparoscopy. A conclusive diagnosis of endometriosis requires this test. Laparoscopy is a minor surgical procedure conducted while you are under anesthesia. A thin instrument called a laparoscope, which looks like a tiny telescope, is inserted into the pelvic cavity through a small cut near the belly button. This procedure usually shows the location, size, and extent of the growths.
Treatment
There is still no cure for endometriosis, but the treatment options have been very successful. Success of treatment varies from patient to patient.
Pain medication: For women with mild symptoms, endometriosis may be treated by over-the-counter pain medications like ibuprofen or naproxyn. If these are not strong enough, your doctor may prescribe a stronger painkiller.
Hormonal Treatment: There are a variety of hormonal drugs that treat endometriosis. The purpose of all of these drugs is to suppress the growth of endometrial implants. None of the drugs are effective in treating endometrial nodules or endometriomas, which need to be treated surgically. Hormonal drugs are not to be used in women who wish to become pregnant. These treatments are best for women who have small growths and who don't have severe pain.
- Birth control pills prevent the effects of natural hormones on endometrial growths. Consequently, they prevent the monthly build-up and breakdown of growths that lead to a problematic build-up of endometrial matter. Birth control pills also make a woman's period lighter and less uncomfortable. As soon as a woman stops taking the pills, she will again be able to become pregnant, and her symptoms of endometriosis may return.
- Progestins work similarly to birth control pills. As with a woman taking birth control pills, a woman taking progestin will not be able to become pregnant. When she stops taking progestin, she will be able to become pregnant, but her symptoms may return.
- Gonadotropin releasing hormone agonists (GnRH agonists) relieve symptoms and also slow the growth and spread of endometriosis. They reduce the amount of estrogen in a woman's body and thus stop the monthly cycle entirely. Leuprolide (Lupron) is an example of this treatment for endometriosis. These hormones should not be taken independently for more than 6 months because they can destroy bone mass, causing osteoporisis. However, healthcare professionals sometimes recommend that women take GnRH along with estrogen, which enables them to take the GnRH for longer periods of time. When a woman stops this treatment, her periods will return, along with the ability to get pregnant.
Surgical Treatment: Surgery is the best choice for women who have severe cases of endometriosis, including many or large growths, severe pain, or infertility. There are several kinds of surgical procedures:
- Laparoscopy: This procedure is used to diagnose and treat endometriosis. During the surgery, doctors remove growths and scar tissue while the patient is under anesthesia. The goal is to remove the endometrial tissue without damaging the healthy tissue around it. The growths and scar tissue are destroyed with extreme heat. The recovery process from laparoscopy is generally pretty fast.
- Laparotomy or major abdominal surgery: These procedures are the last resort for severe endometriosis. During this surgery, the doctor makes an incision in the abdomen. Then the doctor removes growths of endometriosis in the pelvis or abdomen. Recovery times varies from patient to patient.
Hysterectomy is only an option for women who do not wish to become pregnant in the future. During this surgery, the uterus is removed entirely. The ovaries and fallopian tubes may be removed as well. This procedure is only considered when the endometriosis has done severe damage to the reproductive organs.
Empower Yourself
Dealing with endometriosis
Rest — Make sure you get plenty of rest, especially in the week leading up to your period. The pain associated with endometriosis may impede sleep patterns, so you need to rest well when symptoms are not flaring.
Diet — Regular, balanced meals are important to good health. Avoid sugary, fatty foods and caffeine. Vitamin and mineral supplements can be very helpful.
Exercise — Exercise stimulates hormones that lift your mood and reduce depression. Try gentle exercise when you're in pain. Yoga and Pilates offer calming, challenging, and supported exercises.
Pain management — Heat packs are good for back pain. Relaxation exercises may help as well. Keep a pain diary to show your doctor.
Dealing with emotions — Mood swings can be a result of the hormonal fluctuations that come during your period, and endometriosis can worsen symptoms. Depression and exhaustion are common results of endometriosis, especially around menstruation. Explain to family and friends why your mood is affected at this time so they can be more understanding of what you're going through.
Frequently asked questions
What is endometriosis?
Endometriosis is a disease characterized by the presence of tissue that is histologically identical to endometrium (the inner lining of the uterine wall) outside the uterine cavity. Usually, endometriosis is confined to the pelvic and lower abdominal cavity; however, it has sometimes been found to be in other areas, as well. Endometriosis is one of the most common problems that gynecologists treat.
How common is endometriosis?
As reported in medical journals, the prevalence of this disease in the general population is about 5% of the female population of reproductive age. However, in women with severe menstrual cramps, the incidence of endometriosis is between 25% and 35%.
Is there any age group which is more prone to endometriosis?
Endometriosis has been reported only in women of reproductive age, right after the start of the menstrual cycle until menopause or the early postmenopausal year. The disease is normally not seen before age 15 or after menopause.
Is endometriosis based on a genetic or familial factor?
Several studies have shown that the incidence of endometriosis is much higher in women having a sister or mother who has had endometriosis. It has been suggested that endometriosis might result from an inheritable immunodeficiency disorder.
Is it true that women who have their tubes tied are protected from endometriosis?
Theoretically, blockage of the tubes by tubal ligation or from any other cause (for instance, pelvic inflammatory disease) should prevent the further progression of endometriosis.
At the time of my laparoscopy, my doctor was not able to get a biopsy. Is the physical appearance of endometriosis adequate for diagnosis?
A biopsy of the lesion documents the presence of endometrial tissue. Today, many surgeons will videotape the laparoscopy and this can be reviewed at a later date if there are any questions.
Is it true that endometriosis is more common in some races?
There is some evidence among researchers that Caucasians are at greater risk than African Americans. Two studies have found that endometriosis occurs in African Americans half as often as in Caucasians. However, the notion that African-American women rarely suffer from endometriosis is incorrect. Some data shows that the risk of disease among Asian women is even higher than in Caucasians.
Is there a relationship between endometriosis and the use of tampons?
This is unlikely. Scientifically, there has not been any basis to indicate that the use of tampons increases the risk of developing endometriosis.
Do women with more menstrual cramps have a greater tendency to acquire endometriosis?
Although one of the most common characteristics of women with endometriosis is severe menstrual cramps, this appears to be the result of the disease rather than a cause of it.
Glossary of endometriosis terms
Biopsy: Removal of a tissue sample from the body for examination.
Computed tomography (CT) scan: A diagnostic imaging study that gives a three-dimensional picture of the inside of the body.
Dyspareunia: Painful sexual intercourse.
Dysuria: Painful urination.
Endometrioma: A blood-filled cyst made up of tissue from the lining of the uterus.
Endometrium: The lining of the uterus.
Hematuria: The presence of blood in the urine.
Hysterectomy: Surgical removal of the uterus.
Laparoscopy: A procedure in which a thin tube called a laparoscope is inserted into the abdomen through a tiny incision next to the navel. The procedure may be used for examination and/or surgical removal of endometriosis.
Magnetic resonance imaging (MRI): A noninvasive diagnostic imaging study that provides computerized images of the inside of the body.
Ultrasound: A noninvasive, diagnostic imaging study that uses sound waves to provide a picture of the inside of the body.
Endometriosis Resources and Tools
Government Agencies
*Accepts Spanish calls
*National Women's Health Information Center, OWH, HHS
8270 Willow Oaks Corporate Drive
Fairfax, VA 22031
Phone: (800) 994-9662
TDD: (888) 220-5446
FAX: (703) 663-6942
http://www.4woman.gov/faq/endomet.htm
* National Center for Complementary and Alternative Medicine, NIH, HHS
PO Box 7923
Gaithersburg, MD 20898
Phone: (888) 644-6226
TTY: (866) 464-3615
FAX: (866) 464-3616
http://nccam.nih.gov
Private Organizations
The Endometriosis Association
8585 N. 76th Place
Milwaukee, WI 53223
Phone: (414) 355-2200
Fax: (414) 355-6065
www.endometriosisassn.org
Endometriosis Research Center
630 Ibis Drive
Delray Beach, FL 33444
Phone: (800) 239-7280
Fax: (561) 274-0931
http://www.endocenter.org/
Newsletters, Magazines, Reports
Healthy Women Today
The National Women's Health Information Center
www.womenshealth.gov/newsletter
Endometriosis News
To stay up-to-date on what's going on in endometriosis research, check out this frequently updated web site.
http://www.endometriosis.org/news.html
Tools
Dioxin Fact Sheet
Learn about this chemical, which has been shown to cause endometriosis in certain cases.
http://www.niehs.nih.gov/oc/factsheets/dioxin.htm
Leaflets and Brochures
The Endometriosis Association in Victoria, Australia is a self-help group run for and by women with endometriosis. This supportive group distributes brochures and leaflets to help sufferers of endometriosis and their families.
To request a leaflet, email: info@endometriosis.com.au
or visit www.endometriosis.com.au
Professional: