Endometriosis is a noncancerous condition in which tissue similar to the endometrium (uterine lining) grows outside your uterus and adheres to other structures, most commonly in the pelvis, such as on the ovaries, bowel, fallopian tubes or bladder. Rarely it implants in other places, such as the liver, lungs, diaphragm and surgical sites.
It is a common cause of pelvic pain and infertility. It affects about 5 million women in the United States.
Historically thought of as a disease that affects adult women, endometriosis is increasingly being diagnosed in adolescents, as well.
The most common symptoms are painful menstrual periods and/or chronic pelvic pain.
- Diarrhea and painful bowel movements, especially during menstruation
- Intestinal pain
- Painful intercourse
- Abdominal tenderness
- Severe menstrual cramps
- Excessive menstrual bleeding
- Painful urination
- Pain in the pelvic region with exercise
- Painful pelvic examinations
It is important to understand that other conditions aside from endometriosis can cause any or all of these symptoms and other causes may need to be ruled out. These include, but are not limited to, interstitial cystitis, irritable bowel syndrome, inflammatory bowel disease, pelvic adhesions (scar tissue), ovarian masses, uterine abnormalities, fibromyalgia, malabsorption syndromes and, very rarely, malignancies.
Gynecologists and reproductive endocrinologists, gynecologists who specialize in infertility and hormonal conditions, have the most experience in evaluating and treating endometriosis.
The condition can be very difficult to diagnose, however, because symptoms vary so widely and may be caused by other conditions.
Among the ways doctors diagnose the disease are:
Laparoscopy. Currently, laparoscopy is the gold standard for the diagnosis of endometriosis and is commonly used for both diagnosis and treatment. Performed under general anesthesia, the surgeon inserts a miniature telescope called a laparoscope through a small incision in the navel to view the location, size and extent of abnormalities (such as adhesions) in the pelvic region.
However, merely looking through the laparoscope can’t diagnose deep endometriosis disease, in which the endometrial tissue is hidden inside adhesions or underneath the lining of the abdominal cavity. More extensive dissection is needed to diagnose and treat this type of disease.
Many women have a combination of both deep and superficial (in which the endometrial tissue can be easily seen) endometrial disease.
Peritoneal tissue biopsy. During the laparoscopy, the doctor may remove a tiny piece of peritoneal tissue (the inner layer of the lining of the abdominal cavity) or other suspicious areas to help establish the diagnosis of endometriosis. This is recommended by the American College of Obstetricians and Gynecologists (ACOG), which notes that only an experienced surgeon familiar with the appearance of endometriosis should rely on visual inspection alone to make the diagnosis. A biopsy, however, is not mandatory to diagnose endometriosis, and a negative biopsy does not rule out the presence of this disease in other areas within the abdomen.
Ultrasonography, MRI and CT scan. An ultrasound uses sound waves to visualize the inside of your pelvic region, while an MRI uses magnets and a CT scan uses radiation. While these tests can occasionally suggest endometriosis, particularly ovarian endometriotic cysts called “endometrioma,” or rule out other conditions, none can definitively confirm the condition.
At this point, there is no established noninvasive method to diagnosis endometriosis, which is frustrating for both women and their health care providers.
Pelvic exam. Your doctor will perform a physical examination, including a pelvic exam, to aid in the evaluation. The examination will not diagnose endometriosis but may allow your doctor to feel nodules, areas of tenderness or masses on the ovaries that may suggest endometriosis.
Medical history. A detailed medical history may offer your health care professional the earliest clues in making the correct diagnosis.
There is no universal cure for endometriosis. However, there are a number of options available for treating and managing the disease after diagnosis. They fall into four categories: medical, surgical, alternative treatments and pregnancy.
- Medical. The most common medical therapies for endometriosis are nonsteroidal anti-inflammatories (NSAIDs), hormonal contraceptives (in oral, patch, and intrauterine or injectable applications) and other hormonal regimens, such as GnRH agonists (gonadotropin-releasing hormone drugs).
- Non-steroidal anti-inflammatories (NSAIDs). These drugs, such as ibuprofen, naproxen and aspirin, are often the first step in controlling endometriosis-related symptoms. They may be used long-term in a non-pregnant patient to manage symptoms, in part because they are effective at reducing implantation, are cheaper and easier to use than other options and have fewer side effects than hormonal treatments. However, some patients may experience severe gastrointestinal upset from these agents, particularly if they are administered for prolonged periods and at high doses. They are more effective when taken before pain starts.
- Contraceptive hormones (birth control pills). This option also costs less and has fewer side effects than other hormonal treatment options and may be recommended soon after diagnosis. Birth control pills stop ovulation, thus suppressing the effects of estrogen on endometrial tissue. In most cases, women taking hormonal contraceptives have a lighter and shorter period than they did before taking them. Often physicians will recommend using birth control pills continuously as opposed to cyclically to eliminate regular menstrual flow, which can be the cause of increased pain in some women with endometriosis.
- Medroxyprogesterone (Depo-Provera). This injectable drug, usually used as birth control, effectively halts menstruation and the growth of endometrial tissue, relieving the signs and symptoms of endometriosis. Side effects include weight gain, depressed mood and abnormal uterine bleeding (breakthrough bleeding and spotting), as well as a prolonged delay in returning to regular menstrual cycles, which can be of concern to women who want to conceive.
- Gonadotropin Releasing Hormone Drugs (GnRH agonists). These drugs block the production of ovarian-stimulating hormones, which prevents menstruation and lowers estrogen levels, thus causing endometrial implants to shrink. GnRH agonists usually lead to endometriosis remission during treatment and sometimes for months or years afterward. However, GnRH agonists have side effects, including menopausal symptoms like hot flashes, vaginal dryness and reversible loss of bone density. Add-back hormone therapy, which typically consists of a synthetic progesterone (progestin) administered alone or in combination with a low-dose estrogen, is typically prescribed along with GnRH agonists to alleviate these side effects.
- Danazol. This reproductive hormone is a synthetic form of a male hormone (androgen) and is available as Danocrine. It is used to treat endometriosis and works by directly suppressing endometrial tissue and suppressing ovarian hormone production. A woman taking danazol will typically not ovulate or get regular periods. Side effects may include weight gain, hair growth and acne, among others. Some of the side effects are reversible. Danazol is typically given for six to nine months at a time. Danazol is not a contraceptive agent, and it is critical that any woman taking this drug also use a barrier contraceptive (condoms, diaphragm, IUD) if she is sexually active.
- Progestin-containing intrauterine device. Several studies have shown that an intrauterine device (IUD) containing a synthetic type of progesterone (progestin) can also reduce the painful symptoms and extent of disease associated with endometriosis. If effective, the IUD can be left in the uterus for three to five years and can be removed if a woman wants to conceive. There are currently three FDA-approved brands—Mirena, Skyla, and Liletta—and each has different characteristics; Mirena can be left in place the longest. It should not be used in women with multiple sexual partners, those with an abnormal uterus (fibroids) or those with prior sexually transmitted disease. Side effects include cramping and breakthrough bleeding.
- Aromatase inhibitors. This class of drugs inhibits the actions of one of the enzymes that forms estrogen in the body and can block the growth of endometriosis. It is important to understand that this class of drugs is not approved for use in the treatment of endometriosis by the U.S. Food and Drug Administration; it is under investigation. Side effects include hot flushes, bone loss and the potential for increased risk of birth defects if a woman conceives while taking these medications and remains on them. Their use should be limited to women participating in research trials or after obtaining written consent from a physician who is thoroughly familiar with this class of drugs.
- Surgical. The goal of any surgical procedure should be to remove endometriotic tissue and scar tissue. Hormonal therapies may be prescribed together with the more conservative surgical procedures.Surgical treatments range from removing the endometrial tissues via laparoscopy to removing the uterus, called a hysterectomy, often with the ovaries (called an oophorectomy). Surgery classified as “conservative” removes the endometrial growths, adhesions and scar tissue associated with endometriosis without removing any organs. Conservative surgery may be done with a laparoscope or, if necessary, through an abdominal incision.
- Laparoscopy. During a laparoscopy, an outpatient surgery also referred to as “belly-button surgery,” the surgeon views the inside of the abdomen through a tiny lighted telescope inserted through one or more small incisions in the abdomen. From there, the surgeon may destroy endometrial tissue with electrical, ultrasound-generated or laser energy or by cutting it out. There is a risk of scar tissue, which could lead to infertility, making pain worse, or damaging other pelvic structures. Surgery to remove endometriosis involving the ureters and bowel can be especially complex and requires a high degree of surgical skill.
- Laparotomy. A laparotomy is similar to a laparoscopy but is more extensive, involving a full abdominal incision and a longer recovery period.
- Hysterectomy. During a hysterectomy, your uterus is removed. This leaves you infertile. Hysterectomy alone may not eliminate all endometrial tissue, however, because it can’t remove tissue outside of the uterus or ovaries. Additionally, surgery to remove the uterus may not relieve the pain associated with endometriosis.
- Oophorectomy. Removing the ovaries with the uterus improves the likelihood of successful treatment with hysterectomy because the ovaries secrete estrogen, which can stimulate growth of endometriosis. It also renders you infertile, however.
If you wish to preserve your fertility, discuss other treatment options with your health care professional and consider seeking a second opinion.
There has only been one comparative study of medical and surgical therapies to see which approach is better. This trial demonstrated improved outcomes with GnRH agonist and add-back therapy alone or after surgery in comparison to surgery alone. Each approach has advantages and disadvantages. Often, your plan of care will be a combination of treatments with medical therapy recommended either before or after surgery.
- Alternative treatments. Alternative treatments for relieving the painful symptoms of endometriosis include traditional Chinese medicine, nutritional approaches, exercise, yoga, homeopathy, acupuncture, allergy management and immune therapy.While some health care professionals may tell you these alternative paths to seeking pain relief from endometriosis are a waste of time, others may encourage you to try alternative methods of pain relief as long as they are not harmful to your condition. Either way, discuss any options you want to try with your health care professional. Also keep in mind that while these options may help relieve the pain of endometriosis, they won’t cure the condition. Few if any alternative treatments have undergone rigorous scientific evaluation.
- Pregnancy. While it can’t be considered a “treatment” for endometriosis, pregnancy may relieve endometriosis-related pain, an improvement that may continue after the pregnancy ends.Health care professionals attribute this pregnancy-related relief to the hormonal changes of pregnancy. For example, ovulation and menstruation stop during pregnancy, and it’s menstruation that triggers the pain of endometriosis.Plus, endometrial tissue typically becomes less active during pregnancy and may not be as painful or large without hormonal stimulation. However, in many cases, once the pregnancy and breastfeeding end and menstruation returns, symptoms also return.
If endometriosis has caused infertility, you have several treatment options, including surgery, drugs to stimulate ovulation, typically administered with intrauterine insemination or in vitro fertilization. The appropriate approach would be based on the results of a complete evaluation including an assessment of the male partner. In general, medicines that suppress the painful symptoms of endometriosis, such as GnRH agonists, oral contraceptives and danazol, do not improve the likelihood of pregnancy. The only possible exception would be that the use of a course of GnRH agonists before in vitro fertilization may improve outcomes in certain endometriosis patients, according to several recent studies.
There is no known way to prevent endometriosis. However, some health care professionals believe there might be a certain level of protection against the disease if you begin having children early in life and have more than one child.
Additionally, you may prevent or delay the development of endometriosis with an early diagnosis and treatment of any menstrual obstruction, a condition in which a vaginal cyst, vaginal tumor or other growth or lesion prevents endometrial tissue from leaving your body during menstruation.
There also is some evidence that long-term birth control pill users are less likely to develop endometriosis.
Facts to Know
- Endometriosis is a noncancerous condition that affects about 5 percent of reproductive-age women.
- About 5 million women in the United States have been diagnosed with endometriosis.
- Endometriosis develops when cells similar to the endometrium—or uterine lining—grow outside the uterus and stick to other structures, most commonly the ovaries, bowel, fallopian tubes or bladder. Endometrial tissue may migrate outside of the pelvic cavity to distant parts of the body. Researchers aren’t sure what causes this condition.
- Symptoms of endometriosis can range from mild pain to pain severe enough to interfere with a woman’s ability to lead a normal life. Other symptoms include heavy menstrual bleeding, cramping, diarrhea and painful bowel movements during menstruation, and painful intercourse. However, you may have the disease and experience none of these symptoms.
- A laparoscope is commonly used to diagnose and treat endometriosis. Laparoscopy allows a surgeon to view abnormalities in the pelvic region via a miniature telescope inserted through the abdominal wall, usually through the navel. While this is the best method of diagnosis available, it doesn’t rule out endometriosis just because the doctor doesn’t see any endometrial tissue.
- Hormonal changes that occur during pregnancy can temporarily halt the painful symptoms of endometriosis since menstruation stops and estrogen levels drop.
- There is no cure for endometriosis. Treatment options include minor and major surgery and medical therapies, including hormonal contraceptives and other hormonal drugs, such as GnRH (gonadotropin-releasing hormone) agonists, that limit the estrogen release that stimulates endometrial tissue growth.
- There is some evidence that a family history of endometriosis may contribute to your likelihood of developing this disease. If you have a mother or sister who is battling endometriosis or has been diagnosed with it, your risk of developing the disease is higher than someone with no family history.