Endometriosis (en-doe-me-tree-O-sis) is an often-painful condition in which tissue that is similar to the inner lining of the uterus grows outside the uterus. It often affects the ovaries, fallopian tubes and the tissue lining the pelvis. Rarely, endometriosis growths may be found beyond the area where pelvic organs are located.
Endometriosis tissue acts as the lining inside the uterus would — it thickens, breaks down and bleeds with each menstrual cycle. But it grows in places where it doesn't belong, and it doesn't leave the body. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated and form scar tissue. Bands of fibrous tissue called adhesions also may form. These can cause pelvic tissues and organs to stick to each other.
Endometriosis can cause pain, especially during menstrual periods. Fertility problems also may develop. But treatments can help you take charge of the condition and its complications.
The main symptom of endometriosis is pelvic pain. It's often linked with menstrual periods. Although many people have cramping during their periods, those with endometriosis often describe menstrual pain that's far worse than usual. The pain also may become worse over time.
Common symptoms of endometriosis include:
The seriousness of your pain may not be a sign of the number or extent of endometriosis growths in your body. You could have a small amount of tissue with bad pain. Or you could have lots of endometriosis tissue with little or no pain.
Still, some people with endometriosis have no symptoms. Often, they find out they have the condition when they can't get pregnant or after they get surgery for another reason.
For those with symptoms, endometriosis sometimes may seem like other conditions that can cause pelvic pain. These include pelvic inflammatory disease or ovarian cysts. Or it may be confused with irritable bowel syndrome (IBS), which causes bouts of diarrhea, constipation and stomach cramps. IBS also can happen along with endometriosis. This makes it harder for your health care team to find the exact cause of your symptoms.
See a member of your health care team if you think you might have symptoms of endometriosis.
Endometriosis can be a challenge to manage. You may be better able to take charge of the symptoms if:
The exact cause of endometriosis isn't clear. But some possible causes include:
Factors that raise the risk of endometriosis include:
Any health condition that prevents blood from flowing out of the body during menstrual periods also can be an endometriosis risk factor. So can conditions of the reproductive tract.
Endometriosis symptoms often happen years after menstruation starts. The symptoms may get better for a time with pregnancy. Pain may become milder over time with menopause, unless you take estrogen therapy.
The main complication of endometriosis is trouble getting pregnant, also called infertility. Up to half of people with endometriosis have a hard time conceiving.
For pregnancy to happen, an egg must be released from an ovary. Then the egg has to travel through the fallopian tube and become fertilized by a sperm cell. The fertilized egg then needs to attach itself to the wall of the uterus to start developing. Endometriosis may block the tube and keep the egg and sperm from uniting. But the condition also seems to affect fertility in less-direct ways. For instance, it may damage the sperm or egg.
Even so, many with mild to moderate endometriosis can still conceive and carry a pregnancy to term. Health care professionals sometimes advise those with endometriosis not to delay having children. That's because the condition may become worse with time.
Some studies suggest that endometriosis raises the risk of ovarian cancer. But the overall lifetime risk of ovarian cancer is low to begin with. And it stays fairly low in people with endometriosis. Although rare, another type of cancer called endometriosis-associated adenocarcinoma can happen later in life in those who've had endometriosis.
To find out if you have endometriosis, your doctor will likely start by giving you a physical exam. You'll be asked to describe your symptoms, including where and when you feel pain.
Tests to check for clues of endometriosis include:
Laparoscopy. In some cases, you may be referred to a surgeon for this procedure. Laparoscopy lets the surgeon check inside your abdomen for signs of endometriosis tissue. Before the surgery, you receive medicine that puts you a sleep-like state and prevents pain. Then your surgeon makes a tiny cut near your navel and inserts a slender viewing instrument called a laparoscope.
A laparoscopy can provide information about the location, extent and size of the endometriosis growths. Your surgeon may take a tissue sample called biopsy for more testing. With proper planning, a surgeon can often treat endometriosis during the laparoscopy so that you need only one surgery.
Treatment for endometriosis often involves medicine or surgery. The approach you and your health care team choose will depend on how serious your symptoms are and whether you hope to become pregnant.
Typically, medicine is recommended first. If it doesn't help enough, surgery becomes an option.
Your health care team may recommend pain relievers that you can buy without a prescription. These medicines include the nonsteroidal anti-inflammatory drugs (NSAIDs) ibuprofen (Advil, Motrin IB, others) or naproxen sodium (Aleve). They can help ease painful menstrual cramps.
Your care team may recommend hormone therapy along with pain relievers if you're not trying to get pregnant.
Sometimes, hormone medicine help ease or get rid of endometriosis pain. The rise and fall of hormones during the menstrual cycle causes endometriosis tissue to thicken, break down and bleed. Lab-made versions of hormones may slow the growth of this tissue and prevent new tissue from forming.
Hormone therapy isn't a permanent fix for endometriosis. The symptoms could come back after you stop treatment.
Therapies used to treat endometriosis include:
Conservative surgery removes endometriosis tissue. It aims to preserve the uterus and the ovaries. If you have endometriosis and you're trying to become pregnant, this type of surgery may boost your chances of success. It also may help if the condition causes you terrible pain — but endometriosis and pain may come back over time after surgery.
Your surgeon may do this procedure with small cuts, also called laparoscopic surgery. Less often, surgery that involves a larger cut in the abdomen is needed to remove thick bands of scar tissue. But even in severe cases of endometriosis, most can be treated with the laparoscopic method.
During laparoscopic surgery, your surgeon places a slender viewing instrument called a laparoscope through a small cut near your navel. Surgical tools are inserted to remove endometriosis tissue through another small cut. Some surgeons do laparoscopy with help from robotic devices that they control. After surgery, your health care team may recommend taking hormone medicine to help improve pain.
Endometriosis can lead to trouble getting pregnant. If you have a hard time conceiving, your health care team may recommend fertility treatment. You might be referred to a doctor who treats infertility, called a reproductive endocrinologist. Fertility treatment can include medicine that helps ovaries make more eggs. It also can include a series of procedures that mix eggs and sperm outside the body, called in vitro fertilization. The treatment that's right for you depends on your personal situation.
Hysterectomy is surgery to remove the uterus. Taking out the uterus and ovaries was once thought to be the most effective treatment for endometriosis. Today, some experts consider it to be a last resort to ease pain when other treatments haven't worked. Other experts instead recommend surgery that focuses on the careful and thorough removal of all endometriosis tissue.
Having the ovaries removed, also called oophorectomy, causes early menopause. The lack of hormones made by the ovaries may improve endometriosis pain for some. But for others, endometriosis that remains after surgery continues to cause symptoms. Early menopause also carries a risk of heart and blood vessel diseases, certain metabolic conditions and early death.
In people who don't want to get pregnant, hysterectomy sometimes can be used to treat symptoms linked with endometriosis. These include heavy menstrual bleeding and painful menses due to uterine cramping. Even when the ovaries are left in place, a hysterectomy may still have a long-term effect on your health. That's especially true if you have the surgery before age 35.
To manage and treat endometriosis, it's key to find a health care professional with whom you feel comfortable. You may want to get a second opinion before you start any treatment. That way, you can be sure you know all of your options and the pros and cons of each.
It may take time to find a treatment that works. Until then, you can try some things at home to ease your pain.
You also can ask your health care team if physical therapy might help. A therapist can teach you how to relax muscles that support the uterus, called the pelvic floor. Relaxing these tight muscles may help pelvic pain linked with endometriosis feel less intense.
Alternative medicine involves treatments that aren't part of standard medical care. Some people with endometriosis say they get pain relief from alternative therapies such as:
Acupuncture has shown some promise at easing endometriosis pain. But overall, there's little research on much relief people with the condition might get from alternative medicine. Always check with your health care team before you try a new alternative therapy to find out if it's safe for you. For example, supplements and herbs can affect standard treatments such as medicines. If you're interested in trying acupuncture or chiropractic care, ask your care team to recommend reputable professionals. Check with your insurance company to see if the expense will be covered.
Think about joining a support group if you have endometriosis or a complication such as fertility trouble. Sometimes it helps simply to talk to other people who can relate to your feelings and experiences. If you can't find a support group in your community, look for one online.
Your first appointment will likely be with either your primary care doctor or a gynecologist. If you're seeking treatment for infertility, you may be referred to a doctor called a reproductive endocrinologist.
Appointments can be brief, and it can be hard to remember everything you want to discuss. So it's a good idea to plan ahead for your appointment.
For endometriosis, some basic questions to ask your doctor include:
Make sure that you understand everything your health care team tells you. It's fine to ask your team to repeat information or to ask follow-up questions.
Some questions your doctor might ask include: