Endometriosis is a disorder of the female reproductive system. In endometriosis, the endometrium, which normally lines your uterus, grows in other places as well. Most often, this growth is on your fallopian tubes, ovaries or the tissue lining your pelvis.
When endometrial tissue is located elsewhere in your body, it continues to act as it normally would during a menstrual cycle: It thickens, breaks down and bleeds each month. Because there's nowhere for the blood from this displaced tissue to exit your body, it becomes trapped, and surrounding tissue can become irritated.
Trapped blood may lead to cysts, scar tissue and adhesions — abnormal tissue that binds organs together. This process can cause pelvic pain, especially during your period. Endometriosis also can cause fertility problems.
Endometriosis can be mild, moderate or severe, and without treatment, it tends to get worse over time. Some women with endometriosis have no signs and symptoms at all, and the disease is discovered only when bits of endometrial tissue (implants) are found outside the uterus during an unrelated operation, such as a tubal ligation. Other women may experience one or more of the following signs and symptoms:
Endometriosis is sometimes mistaken for other conditions that can cause pelvic pain, such as pelvic inflammatory disease (PID) or ovarian cysts. It may be confused with irritable bowel syndrome (IBS), a condition that causes bouts of diarrhea, constipation and abdominal cramping. IBS can accompany endometriosis, which can complicate the diagnosis.
When to see a doctor
See your doctor if you have signs and symptoms that may indicate endometriosis. The cause of chronic or severe pelvic pain may be difficult to pinpoint. But discovering the problem early may help you avoid unnecessary complications and pain.
The cause of endometriosis remains uncertain. Experts are studying the roles that hormones and the immune system play in this condition.
One theory holds that menstrual blood containing endometrial cells flows back through the fallopian tubes, takes root and grows. Another hypothesis proposes that the bloodstream carries endometrial cells to other sites in the body. Still another theory speculates that a predisposition toward endometriosis may be carried in the genes of certain families. A faulty immune response also may contribute to the development of endometriosis.
Other researchers believe that certain cells present within the abdomen in some women retain their ability to become endometrial cells. These same cells were responsible for the growth of the women's reproductive organs at the embryo stage. It's believed that genetic or environmental influences in later life allow these cells to give rise to endometrial tissue outside the uterus.
Among the factors that place you at greater risk of developing endometriosis are:
Endometriosis usually takes several years after the onset of menstruation (menarche) to develop. When menstruation ends permanently with menopause or temporarily with pregnancy, the signs and symptoms of endometriosis stop. They can begin again after pregnancy when menstruation resumes. Rarely, hormone replacement therapy after menopause can reactivate the disorder.
The main complication of endometriosis is impaired fertility. Approximately one-third to one-half of women who have endometriosis have difficulty getting pregnant.
For pregnancy to occur, an egg must be released from an ovary, travel through the fallopian tube, become fertilized by a sperm cell and attach itself to the uterine wall to begin development. Endometriosis can produce adhesions that can trap the egg near the ovary. It may inhibit the mobility of the fallopian tube and impair its ability to pick up the egg. In most cases, however, endometriosis probably interferes with conception in more complex ways.
Despite these possible complications, many women with endometriosis are still able to conceive. It may take them a little longer to get pregnant, but most women with mild to moderate endometriosis can become pregnant. During pregnancy, most women have no signs or symptoms of endometriosis.
Doctors sometimes advise women with endometriosis not to delay having children because endometriosis tends to worsen with time. The longer you have endometriosis, the greater your chance of becoming infertile.
Although cancerous changes may occur in endometrial implants, the rate of cancer in this tissue hasn't been shown to be higher than that in other tissues. Having endometriosis doesn't increase your risk of uterine cancer or ovarian cancer.
Your first appointment will be with either your primary care physician or a gynecologist. If you're seeking treatment for infertility, you may be referred to a doctor who specializes in reproductive hormones and optimizing fertility (reproductive endocrinologist).
Because appointments can be brief, and it can be difficult to remember everything you want to discuss, it's a good idea to prepare in advance of your appointment.
What you can do
For endometriosis, some basic questions to ask your doctor include:
Make sure that you understand completely everything that your doctor tells you. Don't hesitate to ask your doctor to repeat information or to ask follow-up questions for clarification.
What to expect from your doctor
Some potential questions your doctor might ask include:
To diagnose endometriosis and other conditions that can cause pelvic pain, your doctor will ask you to describe your symptoms, including the location of your pain and when it occurs.
Tests to check for physical clues of endometriosis include:
Laparoscopy. The only way for your doctor to know for certain that you have endometriosis is by looking inside your abdomen (direct visualization) for signs of endometrial tissue. Commonly, this is accomplished during a minor surgical procedure called laparoscopy.
You receive a general anesthetic before the procedure begins. Using a special needle, your abdomen is expanded (distended) with carbon dioxide gas so that the reproductive organs are easier to see. A tiny incision is made near your navel, and a slender viewing instrument (laparoscope) is inserted. By moving the laparoscope around, the surgeon can view the pelvic and other abdominal organs, looking for signs of endometrial implants.
If you have endometriosis, laparoscopy will tell you and your doctor the extent, size and location of endometrial tissue outside your uterus. This information will help your doctor guide you through treatment options. Sometimes, symptoms and signs are obvious enough that a laparoscopy isn't necessary.
Treatment for endometriosis is usually with medications or surgery. The approach you and your doctor choose depends on the severity of your signs and symptoms and whether you hope to become pregnant. Generally, doctors recommend trying conservative treatment approaches first, opting for surgery as a last resort.
Pain medications
Your doctor may recommend that you take an over-the-counter pain reliever, such as ibuprofen (Advil, Motrin IB, others), to help ease painful menstrual cramps. However, if you find that taking the maximum dose doesn't provide full relief, you may need to try another treatment to manage your signs and symptoms.
Hormone therapy
Supplemental hormones are effective in reducing or eliminating the pain of endometriosis. That's because the rise and fall of hormones during a woman's menstrual cycle causes endometrial implants to thicken, break down and bleed. In fact, if hormonal therapy has little to no effect on your symptoms, consider questioning the diagnosis of endometriosis or its relationship to your symptoms.
Hormonal therapies used to treat endometriosis include:
Hormonal therapies aren't a permanent fix for endometriosis. It's possible that you could experience a recurrence of your symptoms after stopping treatment.
Conservative surgery
If you have endometriosis and are trying to become pregnant, surgery to remove implants may increase your chances of success. If you have severe pain from endometriosis, you may also benefit from surgery.
Conservative surgery removes endometrial growths, scar tissue and adhesions without removing your reproductive organs. Your doctor may do this procedure laparoscopically, or through traditional abdominal surgery in more extensive cases. In laparoscopic surgery, a slender viewing instrument (laparoscope) is inserted through a small incision near your navel. Guided by the laparoscope, your doctor inserts other instruments through another small incision to remove endometrial implants. Such instruments might include a laser, small surgical instruments or a cautery — an instrument that destroys tissue with heat.
Assisted reproductive technologies to help you become pregnant are sometimes preferable to conservative surgery, and doctors often suggest these approaches if conservative surgery is ineffective.
Hysterectomy
In severe cases of endometriosis, a total hysterectomy and the removal of both ovaries may be the best treatment. Hysterectomy alone is also effective, but removing the ovaries ensures that endometriosis will not return. Either type of surgery is typically considered a last resort, especially for women still in their reproductive years. You can't get pregnant after a hysterectomy.
If your pain persists or if finding a treatment that works takes some time, you can try measures at home to relieve your discomfort. Warm baths and a heating pad can help relax pelvic muscles, reducing cramping and pain.
Finding a doctor with whom you feel comfortable is crucial in managing and treating endometriosis. You may also want to get a second opinion before starting any treatment regimen to be sure you know all of your options and the possible outcomes.
Some women report relief from endometriosis pain after acupuncture treatment. However, research is sparse on this — or any other — alternative treatment for endometriosis. If you're interested in pursuing this therapy in the hope that it could help you, ask your doctor to recommend a reputable acupuncturist. Check with your insurance company beforehand to see if the expense will be covered.
Left undiagnosed or untreated, endometriosis can be a frustrating condition. Painful periods can cause you to miss work or school and can strain relationships. Recurring pain can lead to depression, irritability, anxiety, anger and feelings of helplessness. Infertility linked to endometriosis also can cause emotional distress.
That's why it's important to seek treatment if you suspect you may have endometriosis. Keeping a record of your symptoms can aid your doctor in your diagnosis.
If you're dealing with endometriosis or its complications, you may want to consider joining a support group for women with endometriosis or fertility problems. Sometimes it helps simply to talk to other women who can relate to your feelings and experiences. If you can't find a support group in your community, look for one on the Internet.
Because the causes of endometriosis remain elusive, no definite techniques to manage the risk of endometriosis have been developed. Although it appears that women who have given birth are less likely to develop endometriosis than are women who have not, many other factors play a more important role in the decision to have a child.