Endometriosis is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. 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. And because this displaced tissue has no way to exit your body, it becomes trapped. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.
This process 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.
A process called retrograde menstruation is a 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 the menstrual cycle.
Retrograde menstruation alone may not cause endometriosis, though. Instead, the condition may develop when one or more small areas of the abdominal lining turns into endometrial tissue. This is possible because the cells lining the abdominal and pelvic cavities are descended from embryonic cells with the potential to specialize and take on the structure and function of endometrial cells. What activates that potential remains unknown.
Among the factors that place you at greater risk of developing endometriosis are:
- Never giving birth
- One or more relatives (mother, aunt or sister) with endometriosis
- Menstrual cycles shorter than 27 days with bleeding lasting longer than eight days
- Any medical condition that prevents the normal passage of menstrual flow
- A history of pelvic infection
Endometriosis usually develops several years after the onset of menstruation (menarche). The signs and symptoms of endometriosis end temporarily with pregnancy and permanently with menopause.
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 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.
Even so, many women with mild to moderate endometriosis are still able to 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. The longer you have endometriosis, the greater your chance of becoming infertile.
Preparing for your appointment
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
- Write down 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 or vitamin supplements you take. Write down doses and how often you take them.
- Have a family member or close friend accompany you, if possible. You may be given a lot of information at your visit, and it can be difficult to remember everything.
- Take a notebook or notepad with you. Use it to write down 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 certain 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 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:
- How often do you experience these symptoms?
- How long have you been experiencing symptoms?
- How severe are your symptoms?
- Do your symptoms seem to be related to your menstrual cycle?
- Does anything improve your symptoms?
- Does anything make your symptoms worse?
Tests and diagnosis
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. During a vaginal ultrasound, a wand-shaped scanner (transducer) is inserted into your vagina. In an ultrasound of the pelvis via the abdomen, a small scanner is moved across your abdomen. Both tests use sound waves to provide a video image of your reproductive organs. Ultrasound imaging won't definitively tell your doctor whether you have endometriosis, but it is a useful tool for identifying cysts associated with endometriosis (endometriomas).
- 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 implants. 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 surgeon expands (distends) your abdomen 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, your surgeon can view the pelvic and other abdominal organs, looking for signs of endometrial tissue outside the uterus.
If you have endometriosis, laparoscopy will provide you and your doctor with information about the location, extent and size of the endometrial implants. This information will help your doctor guide you through treatment options.
Treatments and drugs
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 ibuprofen (Advil, Motrin, 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 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 a woman's menstrual cycle causes endometrial implants to thicken, break down and bleed.
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 — can 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. This action prevents menstruation and dramatically lowers estrogen levels, causing endometrial implants to shrink. Gn-RH agonists and antagonists can force endometriosis into remission during the time of treatment and sometimes for months or years afterward. These drugs create an artificial menopause that can sometimes lead to troublesome side effects, such as hot flashes and vaginal dryness. Taking a low dose of estrogen or progestin along with Gn-RH agonists and antagonists may decrease such side effects. If Gn-RH agonists don't relieve your pain, it's unlikely that endometriosis is responsible for your symptoms.
- Danazol. Another drug that blocks the production of ovarian-stimulating hormones, preventing menstruation and the symptoms of endometriosis, is danazol. In addition, it suppresses the growth of the endometrium. However, danazol may not be the first choice because it can cause unwanted side effects, such as acne and facial hair.
- 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.
- Aromatase inhibitors. Although not specifically approved for the treatment of endometriosis, studies suggest that aromatase inhibitors may significantly reduce endometriosis-related pain. Aromatase inhibitors work by blocking the conversion of hormones such as androstenedione and testosterone into estrogen and by blocking the production of estrogen from endometrial implants themselves. This deprives endometriosis of the estrogen it needs to grow. To reduce the risk of side effects, such as bone loss and follicular cysts, aromatase inhibitors must be taken in combination with a Gn-RH agonist or an oral estrogen-progestin contraceptive.
Hormonal therapies aren't a permanent fix for endometriosis. It's possible that you could experience a recurrence of your symptoms after stopping treatment.
If you have endometriosis and are trying to become pregnant, surgery to remove endometrial 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.
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. Surgery is typically considered a last resort, especially for women still in their reproductive years. You can't get pregnant after a hysterectomy.
Lifestyle and home remedies
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.
Coping and support
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.