What You Need to Know
- Endometriosis is derived from the word “endometrium,” which is the tissue that lines the uterus. Patients with endometriosis have endometrial-type tissue outside of the uterus
- Endometriosis affects an estimated 2 to 10 percent of American women between the ages of 25 and 40.
- Women with endometriosis are more likely to have infertility or difficulty getting pregnant
- Symptoms of endometriosis may include: excessive menstrual cramps, abnormal or heavy menstrual flow and pain during intercourse.
- Laparoscopy, a minimally invasive surgical procedure, can be used to definitively diagnose and treat endometriosis.
Endometriosis is a common gynecological condition affecting an estimated 2 to 10 percent of American women of childbearing age. The name of this condition comes from the word "endometrium," which is the tissue that lines the uterus.
During a woman's regular menstrual cycle, this tissue builds up and is shed if she does not become pregnant. Women with endometriosis develop tissue that looks and acts like endometrial tissue outside of the uterus, usually on other reproductive organs inside the pelvis or in the abdominal cavity. Each month, this misplaced tissue responds to the hormonal changes of the menstrual cycle by building up and breaking down just as the endometrium does, resulting in small bleeding inside of the pelvis. This leads to inflammation, swelling and scarring of the normal tissue surrounding the endometriosis implants.
When the ovary is involved, blood can become embedded in the normal ovarian tissue, forming a "blood blister" surrounded by a fibrous cyst, called an endometrioma.
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Causes of Endometriosis
The causes of endometriosis are still unknown. One theory suggests that during menstruation, some of the tissue backs up through the fallopian tubes into the abdomen, a sort of "reverse menstruation," where it attaches and grows. Another theory suggests that endometrial tissue may travel and implant via blood or lymphatic channels, similar to the way cancer cells spread. A third theory suggests that cells in any location may transform into endometrial cells.
Endometriosis can also occur as a result of direct transplantation—in the abdominal wall after a cesarean section, for example. Additionally, it appears that certain families may have predisposing genetic factors to the disease.
Where Endometriosis Can Occur
The most common sites of endometriosis include:
The fallopian tubes
Ligaments that support the uterus (uterosacral ligaments)
The posterior cul-de-sac, i.e., the space between the uterus and rectum
The anterior cul-de-sac, i.e., the space between the uterus and bladder
The outer surface of the uterus
The lining of the pelvic cavity
Occasionally, endometrial tissue is found in other places, such as:
Abdominal surgery scars
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Risk Factors of Endometriosis
While any woman may develop endometriosis, the following women seem to be at an increased risk for the disease:
- Women who have a first-degree relative (mother, sister, daughter) with the disease
- Women who are giving birth for the first time after age 30
- Women with an abnormal uterus
The following are the most common symptoms for endometriosis, but each woman may experience symptoms differently or some may not exhibit any symptoms at all. Symptoms of endometriosis may include:
- Pain, especially excessive menstrual cramps that may be felt in the abdomen or lower back
- Pain during intercourse
- Abnormal or heavy menstrual flow
- Painful urination during menstrual periods
- Painful bowel movements during menstrual periods
- Other gastrointestinal problems, such as diarrhea, constipation and/or nausea
It is important to note that the amount of pain a woman experiences is not necessarily related to the severity of the disease. Some women with severe endometriosis may experience no pain, while others with a milder form of the disease may have severe pain or other symptoms.
Relationship of Endometriosis to Infertility
Endometriosis is considered one of the three major causes of female infertility. According to the American Society for Reproductive Medicine, endometriosis can be found in 24 to 50 percent of women who experience infertility. In mild to moderate cases, the infertility may be temporary. In these cases, surgery to remove adhesions, cysts and scar tissue can restore fertility. In other cases — a very small percentage — women may remain infertile.
How endometriosis affects fertility is not clearly understood. It is thought that scar tissue from endometriosis can impair the release of the egg from the ovary and subsequent pickup by the fallopian tube. Other mechanisms thought to affect fertility include changes in the pelvic environment that results in impaired implantation of the fertilized egg.
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For many women, simply having a diagnosis of endometriosis brings relief. Diagnosis begins with a gynecologist or other health care provider evaluating a patient’s medical history and completing a physical examination, including a pelvic exam. A diagnosis of endometriosis can only be certain, though, when the doctor performs a laparoscopy, biopsies any suspicious tissue and the diagnosis is confirmed by examining the tissue beneath a microscope. Laparoscopy is a minor surgical procedure in which a laparoscope, a thin tube with a camera at the end, is inserted into the abdomen through a small incision. Laparoscopy is also used to determine the location, extent and size of the endometrial growths.
Other examinations that may be used in the diagnosis of endometriosis include:
Ultrasound: A diagnostic imaging technique that uses high-frequency sound waves to create an image of the internal organs
CT scan: A noninvasive diagnostic imaging procedure that uses a combination of X-rays and computer technology to produce horizontal, or axial, images — often called slices — of the body to detect any abnormalities that may not show up on an ordinary X-ray
MRI scan: A noninvasive procedure that produces a two-dimensional view of an internal organ or structure
Stages of Endometriosis
A staging, or classification, system for endometriosis has been developed by the American Society of Reproductive Medicine. The stages are classified as follows:
Stage 1: Minimal
Stage 2: Mild
Stage 3: Moderate
Stage 4: Severe
The stage of endometriosis is based on the location, amount, depth and size of the endometrial tissue. Specific criteria include:
The extent of the spread of the tissue
The involvement of pelvic structures in the disease
The extent of pelvic adhesions
The blockage of the fallopian tubes
The stage of the endometriosis does not necessarily reflect the level of pain experienced, risk of infertility or symptoms present. For example, it is possible for a woman in stage 1 to be in tremendous pain, while a woman in stage 4 may be asymptomatic.
Endometriosis Treatment Options
Specific treatment for endometriosis will be determined by your health care provider based on:
Your overall health and medical history
Extent of the disease
Your tolerance for specific medications, procedures or therapies
Expectations for the course of the disease
Your opinion or preference
Your desire for pregnancy
If symptoms are mild, health care providers generally agree that no further treatment, other than pain medication, is necessary.
In general, treatment for endometriosis may include:
“Watchful waiting” to observe the course of the disease
Pain medication: nonsteroidal anti-inflammatory drugs, such as ibuprofen or other over-the-counter analgesics
Hormone therapy, including:
Oral contraceptives, with combined estrogen and progestin (a synthetic form of progesterone) hormones, to prevent ovulation and reduce menstrual flow
Gonadotropin-releasing hormone agonist, which stops ovarian hormone production, creating a sort of “medical menopause”
Danazol, a synthetic derivative of testosterone (a male hormone)
Surgical techniques that may be used to treat endometriosis include:
Laparoscopy (also used to help diagnose endometriosis): A minor surgical procedure in which a laparoscope, a thin tube with a lens and a light, is inserted into an incision in the abdominal wall; using the laparoscope to see into the pelvic area, the doctor can often remove the endometrial growths.
Laparotomy: A more extensive surgery to remove as much of the displaced endometrium as possible without damaging healthy tissue
Hysterectomy: Surgery to remove the uterus and possibly the ovaries
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Easing the Pain of Endometriosis
Simple tips that can help ease the pain of endometriosis include:
- Rest, relax and meditate.
- Take warm baths.
- Prevent constipation.
- Get regular exercise.
- Use a hot water bottle or heating pad on your abdomen.
Sometimes, a combination of therapies is used, such as conservative surgery (laparoscopy or laparotomy), along with hormone therapy.
Some women also benefit from alternative treatments used in conjunction with other medical and surgical therapies for the treatment of endometriosis. These include:
- Traditional Chinese medicine
- Nutritional approaches
- Allergy management
- Immune therapy
It is important to discuss any or all of these treatments thoroughly with your health care provider, as some may conflict with the effectiveness of others.
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From the Johns Hopkins Medicine monthly webcast series, A Woman's Journey, Gynecologist Karen Wang, M.D., discusses the complexity of diagnosis and treatment of endometriosis as a part of "Conversations that Matter."