Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus (endometrial implant). Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region.
In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.
Endometriosis can cause pain — sometimes severe — especially during your period. Fertility problems also may develop. Fortunately, effective treatments are available.
The primary symptom of endometriosis is pelvic pain, often associated with your menstrual period. Although many women experience cramping during their menstrual period, women with endometriosis typically describe menstrual pain that's far worse than usual. They also tend to report that the pain has increased over time.
Common signs and symptoms of endometriosis may include:
Painful periods (dysmenorrhea). Pelvic pain and cramping may begin before and extend several days into your period and may include lower back and abdominal pain.
Pain with intercourse. Pain during or after sex is common with endometriosis.
Pain with bowel movements or urination. You're most likely to experience these symptoms during your period.
Excessive bleeding. You may experience occasional heavy periods (menorrhagia) or bleeding between periods (menometrorrhagia).
Infertility. Endometriosis is first diagnosed in some women who are seeking treatment for infertility.
Other symptoms. You may also experience fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods.
The severity of your pain isn't necessarily a reliable indicator of the extent of the condition. Some women with mild endometriosis have extensive pain, while others with advanced endometriosis may have little pain or even no pain at all.
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.
Although the exact cause of endometriosis is not certain, several possible explanations include:
Retrograde menstruation. This is the most likely explanation for endometriosis. In retrograde menstruation, menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity instead of out of the body. These displaced endometrial cells stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle.
Embryonic cell growth. The cells lining the abdominal and pelvic cavities come from embryonic cells. When one or more small areas of the abdominal lining turn into endometrial tissue, endometriosis can develop.
Surgical scar implantation. After a surgery, such as a hysterectomy or C-section, endometrial cells may attach to a surgical incision.
Endometrial cells transport. The blood vessels or tissue fluid (lymphatic) system may transport endometrial cells to other parts of the body.
Immune system disorder. It's possible that a problem with the immune system may make the body unable to recognize and destroy endometrial tissue that's growing outside the uterus.
Several factors place you at greater risk of developing endometriosis, such as:
Never giving birth
One or more relatives (mother, aunt or sister) with endometriosis
Any medical condition that prevents the normal passage of menstrual flow out of the body
History of pelvic infection
Endometriosis usually develops several years after the onset of menstruation (menarche). Signs and symptoms of endometriosis end temporarily with pregnancy and end permanently with menopause, unless you're taking estrogen.
The main complication of endometriosis is impaired fertility. Approximately one-third to one-half of women with endometriosis have difficulty getting pregnant.
For pregnancy to occur, an egg must be released from an ovary, travel through the neighboring fallopian tube, become fertilized by a sperm cell and attach itself to the uterine wall to begin development. Endometriosis may obstruct the tube and keep the egg and sperm from uniting. But the condition also seems to affect fertility in less-direct ways, such as damage to the sperm or egg.
Even so, many women with mild to moderate endometriosis can still conceive and carry a pregnancy to term. Doctors sometimes advise women with endometriosis not to delay having children because the condition may worsen with time.
Ovarian cancer does occur at higher than expected rates in women with endometriosis. But the overall lifetime risk of ovarian cancer is low to begin with. Some studies suggest that endometriosis increases that risk, but it's still relatively low. Although rare, another type of cancer — endometriosis-associated adenocarcinoma — can develop later in life in women who have had endometriosis
Your first appointment will likely 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
Make a list of any symptoms you're experiencing. Include all of your symptoms, even if you don't think they're related.
Make a list of any medications, herbs or vitamin supplements you take. Include how often you take them and the doses.
Have a family member or close friend accompany you, if possible. You may get a lot of information at your visit, and it can be difficult to remember everything.
Take a notepad or electronic device with you. Use it to make notes of important information during your visit.
Prepare a list of questions to ask your doctor. List your most important questions first, in case time runs out.
For endometriosis, some basic questions to ask your doctor include:
How is endometriosis diagnosed?
What medications are available to treat endometriosis? Is there a medication that can improve my symptoms?
What side effects can I expect from medication use?
Under what circumstances do you recommend surgery?
Will I take a medication before or after surgery?
Will endometriosis affect my ability to become pregnant?
Can treatment of endometriosis improve my fertility?
Can you recommend any alternative treatments I might try?
Make sure that you understand everything 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:
How often do you experience these symptoms?
How long have you had these symptoms?
How severe are your symptoms?
Do your symptoms seem to be related to your menstrual cycle?
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:
Pelvic exam. During a pelvic exam, your doctor manually feels (palpates) areas in your pelvis for abnormalities, such as cysts on your reproductive organs or scars behind your uterus. Often it's not possible to feel small areas of endometriosis, unless they've caused a cyst to form.
Ultrasound. This test uses high-frequency sound waves to create images of the inside of your body. To capture the images, a device called a transducer is either pressed against your abdominal skin or inserted into your vagina (transvaginal ultrasound). Both types of ultrasound may be done to get the best view of your reproductive organs. Ultrasound imaging won't definitively tell your doctor whether you have endometriosis, but it can identify cysts associated with endometriosis (endometriomas).
Laparoscopy. Medical management is usually tried first. But to be certain you have endometriosis, your doctor may refer you to a surgeon to look inside your abdomen for signs of endometriosis using a surgical procedure called laparoscopy. While you're under general anesthesia, your surgeon makes a tiny incision near your navel and inserts a slender viewing instrument (laparoscope), looking for endometrial tissue outside the uterus. He or she may take samples of tissue (biopsy). Laparoscopy can provide information about the location, extent and size of the endometrial implants to help determine the best treatment options.
Treatment for endometriosis is usually with medications or surgery. The approach you and your doctor choose will depend 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.
Your doctor may recommend that you take an over-the-counter pain reliever, such as the nonsteroidal anti-inflammatory drugs (NSAIDs) ibuprofen (Advil, Motrin IB, others) or naproxen (Aleve, 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 approach to manage your signs and symptoms.
Supplemental hormones are sometimes effective in reducing or eliminating the pain of endometriosis. That's because the rise and fall of hormones during the menstrual cycle causes endometrial implants to thicken, break down and bleed. Hormone medication may slow the growth and prevent new implants of endometrial tissue.
However, hormonal therapy isn't a permanent fix for endometriosis. It's possible that you could experience a recurrence of your symptoms after stopping treatment.
Hormonal therapies used to treat endometriosis include:
Hormonal contraceptives. Birth control pills, patches and vaginal rings help control the hormones responsible for the buildup of endometrial tissue each month. Most women have lighter and shorter menstrual flow when they're using a hormonal contraceptive. Using hormonal contraceptives — especially continuous cycle regimens — may reduce or eliminate the pain of mild to moderate endometriosis.
Gonadotropin-releasing hormone (Gn-RH) agonists and antagonists. These drugs block the production of ovarian-stimulating hormones, lowering estrogen levels and preventing menstruation. This causes endometrial tissue to shrink. Gn-RH agonists and antagonists can force endometriosis into remission during the time of treatment and sometimes for months or years afterward. Because these drugs create an artificial menopause, taking a low dose of estrogen or progestin along with Gn-RH agonists and antagonists may decrease menopausal side effects, such as hot flashes, vaginal dryness and bone loss. Your periods and the ability to get pregnant return when the medication is stopped.
Medroxyprogesterone (Depo-Provera). This injectable drug is effective in halting menstruation and the growth of endometrial implants, thereby relieving the signs and symptoms of endometriosis. Its side effects can include weight gain, decreased bone production and depressed mood, among others.
Danazol. This drug suppresses the growth of the endometrium by blocking the production of ovarian-stimulating hormones, preventing menstruation and the symptoms of endometriosis. However, danazol may not be the first choice because it can cause serious side effects and can be harmful to the baby if you become pregnant while taking this medication.
If you have endometriosis and are trying to become pregnant, surgery to remove as much endometriosis as possible while preserving your uterus and ovaries (conservative surgery) may increase your chances of success. If you have severe pain from endometriosis, you may also benefit from surgery — however, endometriosis and pain may return.
Your doctor may do this procedure laparoscopically or through traditional abdominal surgery in more extensive cases. In laparoscopic surgery, your surgeon inserts a slender viewing instrument (laparoscope) through a small incision near your navel and inserts instruments to remove endometrial tissue through another small incision.
Assisted reproductive technologies
Assisted reproductive technologies, such as in vitro fertilization, to help you become pregnant are sometimes preferable to conservative surgery. Doctors often suggest one of these approaches if conservative surgery is ineffective.
In severe cases of endometriosis, surgery to remove the uterus and cervix (total hysterectomy) as well as both ovaries may be the best treatment. Hysterectomy alone is not effective — the estrogen your ovaries produce can stimulate any remaining endometriosis and cause pain to persist. Hysterectomy is typically considered a last resort, especially for women still in their reproductive years. You can't get pregnant after a hysterectomy.
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 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 to see if the expense will be covered.
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.