Endometriosis information

Endometriosis (pronounced en-doh-mee-tree-OH-sis) is a disease in which tissue that normally grows inside the uterus grows outside the uterus. It is one of the most common gynecological diseases, and its primary symptoms include pain and infertility.

What is endometriosis?

Endometriosis is the term used to describe when the tissue that normally lines the uterus grows outside the uterus.

The word endometriosis comes from the word "endometrium" (pronounced en-doh-MEE-tree-uhm)-endo means "inside" and metrium (pronounced MEE-tree-uhm) means "uterus," where a mother carries her baby. Health care providers call the tissue that lines the inside of the uterus the endometrium.

Health care providers may use the terms "implants," "nodules," or "lesions" to describe areas or patches of endometriosis. Most endometriosis patches are found in the pelvic cavity:

• On or under the ovaries
• On the fallopian tubes, which carry egg cells from the ovaries to the uterus
• Behind the uterus
• On the tissues that hold the uterus in place
• On the bowels or bladder

In rare cases, areas of endometriosis can grow on the lungs or in other parts of the body.

Researchers' understanding of endometriosis is changing as scientific evidence proves and disproves long-held assumptions. For example, researchers used to think that pain from endometriosis was related to the size of the patches growing outside the uterus. But evidence shows that this is not the case. In fact, the size and location of the lesions are not related to the severity of pain or to the location of the pain.

Because some women might have endometriosis, but do not have symptoms, it is difficult to know exactly how many women have the condition. Current estimates suggest that 6% to 10% of women of reproductive age have endometriosis, or approximately 5 million women in the United States.

Endometriosis is most common in women in their 30s and 40s, but it can affect any female who menstruates.

Factors that May Increase the Risk of Endometriosis

Studies show that women are at higher risk for endometriosis if their:

• Mother, sister, or daughter had endometriosis (raises the risk about sixfold)
• Periods started at an early age (before age 11)
• Monthly cycles are short (less than 27 days)
• Menstrual cycles are heavy and last more than 7 days

Factors that May Lower the Risk of Endometriosis

Studies also show that some factors may lower the risk for endometriosis, including:

• Pregnancy
• Starting menstruation late in adolescence
• Regular exercise of more than 4 hours a week
• Low amount of body fat

The primary symptoms of endometriosis are pain and infertility.

• Among women with pelvic pain, endometriosis may occur in about 75%.
• Among women with fertility problems, endometriosis may occur in as many as 50%.

Other common symptoms of endometriosis include:

• Painful, even debilitating, menstrual cramps, which may get worse over time
• Pain during or after sex
• Pain in the intestine or lower abdomen
• Painful bowel movements or painful urination during menstrual periods
• Heavy menstrual periods
• Premenstrual spotting or bleeding between periods

In addition, women who are diagnosed with endometriosis may have painful bladder syndrome, digestive or gastrointestinal symptoms similar to a bowel disorder, as well as fatigue, tiredness, or lack of energy.

For some women, the pain symptoms associated with endometriosis get milder after menopause, but this is not always the case. Hormone therapy such as estrogen or birth control pills, given to reduce menopausal symptoms, may cause these endometriosis symptoms to continue.

Endometriosis-Related Pain

Researchers know that pain is a primary symptom of endometriosis, but it is not known how pain arises in women with endometriosis.

The severity of pain does not correspond with the number, location, or extent of endometriosis lesions. Some women with only a few small lesions experience severe pain; other women may have very large patches of endometriosis, but only experience little pain.

Current evidence suggests several possible explanations for pain associated with endometriosis, including (but not limited to):

• Patches of endometriosis respond to hormones in a similar way as the lining of the uterus. These tissues may bleed or have evidence of inflammation every month, similar to a regular menstrual period. However, the blood and tissue shed from endometriosis patches stay in the body and are irritants, which can cause pain.
• In some cases, inflammation and chemicals produced by the endometriosis areas can cause the pelvic organs to adhere, or stick together, causing scar tissue. This makes the uterus, ovaries, and fallopian tubes, as well as the bladder and rectum, appear as one large organ.
• Hormones and chemicals released by endometriosis tissue also may irritate nearby tissue and cause the release of other chemicals known to cause pain.
• Over time, some endometriosis areas may form nodules or bumps as they create lesions on the surface of pelvic organs or can become cysts (fluid-filled sacs) on the ovaries.
• Some endometriosis lesions have nerves in them, tying the patches directly into the central nervous system. These nerves may be more sensitive to pain-causing chemicals released in the lesions and surrounding areas. Over time, they may be more easily activated by the chemicals than normal nerve cells are.
• Patches of endometriosis might also press against nearby nerve cells to cause pain.
• Some women report less endometriosis pain after pregnancy, but the reason for this is unclear. Researchers are trying to determine if the reduction results from the hormones released by the body during pregnancy, or from changes in the cervix, uterus, or endometrium that occur during pregnancy and delivery.

Pain from endometriosis can be severe, interfering with day-to-day activities. Understanding how endometriosis is related to pain is a very active area of research because it could allow for more effective treatments for this specific type of pain.

Surgery is currently the only way to be sure of the diagnosis of endometriosis. The most common surgery is called laparoscopy (pronounced lap-uh-ROS-kuh-pee). In this procedure:

• The surgeon uses an instrument to inflate the abdomen slightly with a harmless gas.
• After making a small cut in the abdomen, the surgeon uses a small viewing instrument with a light, called a laparoscope (pronounced LAP-er-uh-skohp), to look at the reproductive organs, intestines, and other surfaces to see if there is any endometriosis.
• He or she can make a diagnosis based on how the patches of endometriosis look.
• In some cases, the surgeon will also do a biopsy, which involves taking a small tissue sample and studying it under a microscope, to confirm the diagnosis.1

Health care providers may also use imaging methods to produce a "picture" of the inside of the body to help detect endometriosis. Imaging allows them to locate larger endometriosis areas, such as nodules or cysts. The two most common imaging tests are ultrasound, which uses sound waves to make the picture, and magnetic resonance imaging (MRI), which uses magnets and radio waves to make the picture. These types of imaging will not aid in the diagnosis of small lesions or adhesions.

Your health care provider will perform a laparoscopy only after learning your full medical history and giving you a complete physical and pelvic exam. This information, in addition to the results of an ultrasound or MRI, will help you and your health care provider make more informed decisions about treatment.

Health care providers will consider several factors when determining the best treatment for endometriosis symptoms, including:

• Your age
• How severe your symptoms are
• How severe the disease is
• Whether you want children

It is also important to note that not all treatments work well for all women with endometriosis. Similarly, there is always the chance that the endometriosis symptoms may return after the treatment is stopped or, in the case of surgery, as more time passes since the treatment.

Treatments for Pain from Endometriosis

Treatments for endometriosis pain fall into three general categories:

• Pain medications
• Hormone therapy
• Surgical treatment

Pain Medications

Pain medications may work well if your pain or other symptoms are mild. These medications range from over-the-counter pain relievers to strong prescription pain relievers.

The most common types of pain relievers are nonsteroidal anti-inflammatory drugs, also called NSAIDS (pronounced ENN-sedds), and opioids (pronounced OH-pee-oyds), strong pain drugs that interact directly with the nervous system.

Evidence on the effectiveness of these medications for relieving endometriosis-associated pain is limited. Understanding which drugs relieve pain associated with endometriosis could also shed light on how endometriosis causes pain.

Hormone Treatments

Because hormones cause endometriosis patches to go through a cycle similar to the menstrual cycle, hormones also can be effective in treating the symptoms of endometriosis. Additionally, our perception of pain may be altered by different hormones.

Hormone therapy is used to treat endometriosis-associated pain. Hormones come in the form of a pill, a shot or injection, or a nasal spray.

Hormone treatments stop the ovaries from producing hormones, including estrogen, and usually prevent ovulation. This may help slow the growth and local activity of both the endometrium and the endometrial lesions. Treatment also prevents the growth of new areas and scars (adhesions), but it will not make existing adhesions go away.

Health care providers may suggest one of the hormone treatments described below to treat pain from endometriosis:

• Oral contraceptives, or birth control pills. These help make your period lighter, more regular, and shorter. Women prescribed contraceptives also report relief from pain.
  • In general, the therapy contains two hormones-estrogen and progestin, a progesterone-like hormone. Women who can't take estrogen because of cardiovascular disease or a high risk of blood clots can use progestin-only pills to reduce menstrual flow.
  • Typically, a woman takes the pill for 21 days and then takes sugar pills for 7 days to mimic the natural menstrual cycle. Some women take birth control pills continuously, without using the sugar pills that signal the body to go through menstruation. Taken without the sugar pills, birth control pills may stop the menstrual period altogether, which can reduce or eliminate the pain. There are also birth control pills available that provide only a couple days of sugar pills every 3 months; these also help reduce or eliminate pain.
  • Pain relief usually lasts only while taking the pills, while the endometriosis is suppressed. When treatment stops, the symptoms of endometriosis may return (along with the ability to get pregnant). Many women continue treatment indefinitely. Occasionally, some women have no pain for several years after stopping treatment.
  • There are some mild side effects from these hormones, such as weight gain, bloating, and bleeding between periods (especially when women first start to take the pills continuously).

• Progesterone and progestin, taken as a pill, by injection, or through an intrauterine device (IUD), improve symptoms by reducing a woman's period or stopping it completely. This also prevents pregnancy.
  • As a pill taken daily, these hormones reduce menstrual flow without causing the uterus lining to grow. As soon as a woman stops taking the progestin pill, symptoms may return and pregnancy is possible.
  • An IUD containing progestin, such as Mirena®, may be effective in reducing endometriosis-associated pain. It reduces the size of lesions and reduces menstrual flow (one third of women no longer get their period after a year of use).
  • As an injection taken every 3 months, these hormones usually stop menstrual flow. However, one-third of women bleed several times in the first year of injection use. During these times of bleeding, pain may occur. Additionally, it may take a few months for a period to return after stopping the injections. When menstruation starts again, the ability to get pregnant returns.
  • Women taking these hormones may gain weight, feel depressed, or have irregular vaginal bleeding.

• Gonadotropin-releasing hormone (GnRH) agonists(pronounced AG-uh-nists) stop the production of certain hormones to prevent ovulation, menstruation, and the growth of endometriosis. This treatment sends the body into a "menopausal" state.
  • GnRH agonists come in a nose spray taken daily, as an injection given once a month, or as an injection given every 3 months.
  • Most health care providers recommend staying on GnRH agonists for only about 6 months at a time, with several months between treatments if they are repeated. The risk for heart complications and bone loss can rise when taking them longer. After stopping the GnRH agonist, the body comes out of the menopausal state, menstruation begins, and pregnancy is possible.
  • As with all hormonal treatments, endometriosis symptoms return after women stop taking GnRH agonists.
  • These medications also have side effects, including hot flashes, tiredness, problems sleeping, headache, depression, joint and muscle stiffness, bone loss, and vaginal dryness.

• Danazol (pronounced DAY-nuh-zawl, also called Danocrine®) treatment stops the release of hormones that are involved in the menstrual cycle. While taking this drug, women will have a period only now and then or sometimes not at all.
  • Common side effects include oily skin, pimples or acne, weight gain, muscle cramps, tiredness, smaller breasts, and sore breasts. Headaches, dizziness, weakness, hot flashes, or a deepening of the voice may also occur while on this treatment. Danazol's side effects are more severe than those from other hormone treatment options.
  • Danazol can harm a developing fetus. Therefore, it is important to prevent pregnancy while on this medication. Hormonal birth control methods are not recommended while on danazol. Instead, health care providers recommend using barrier methods of birth control, such as condoms or a diaphragm.

Researchers are exploring the use of other hormones for treating endometriosis and the pain related to it. One example is gestrinone (pronounced GES-trih-nohn), which has been used in Europe but is not available in the United States. Drugs that lower the amount of estrogen in the body, called aromatase (pronounced uh-ROH-muh-tase) inhibitors, are also being studied. Some research shows that they can be effective in reducing endometriosis pain, but they are still considered experimental in the United States. They are not approved by the Food and Drug Administration for treatment of endometriosis.

Surgical Treatments

Research shows that some surgical treatments can provide significant, although short-term, pain relief from endometriosis, so health care providers may recommend surgery to treat severe pain from endometriosis. During the operation, the surgeon can locate any areas of endometriosis and examine the size and degree of growth; he or she also may remove the endometriosis patches at that time.

It is important to understand what is planned during surgery as some procedures cannot be reversed and others can affect a woman's fertility. Therefore, a woman should have a detailed discussion with a health care provider about all available options before making final decisions about treatment.

Health care providers may suggest one of the following surgical treatments for pain from endometriosis.

• Laparoscopy. The surgeon uses an instrument to inflate the abdomen slightly with a harmless gas and then inserts a small viewing instrument with a light, called a laparoscope, into the abdomen through a small cut to see the growths.
  • To remove the endometriosis, the surgeon makes at least two more small cuts in the abdomen and inserts lasers or other surgical instruments to:
    • Remove the lesions, which is a process called excising (pronounced eks-SIZE-ing).
    • Destroy the lesions with intense heat and seal the blood vessels without stitches, a process called cauterizing (pronounced KAW-tur-ize-ing) or vaporizing.
  • Some surgeons also will remove scar tissue at this time because it may be contributing to endometriosis-associated pain.
  • The goal is to treat the endometriosis without harming the healthy tissue around it.
  • Although most women have relief from pain with surgery in the short term, pain often returns. The excision of deep lesions seems to be associated with long-term pain relief.
  • Some evidence shows that surgical treatment for endometriosis-related pain is actually more effective in women who have moderate endometriosis rather than minimal endometriosis. The reason is that women with minimal endometriosis may have changes in their pain perception that persist after the lesions are removed.
• Laparotomy. In this major abdominal surgery procedure, the surgeon may remove the endometriosis patches. Sometimes, the endometriosis lesions are too small to see in a laparotomy.
  • During this procedure, the surgeon may also remove the uterus. Removing the uterus is called hysterectomy (pronounced his-tuh-REK-tuh-mee).
  • If the ovaries have endometriosis on them or if damage is severe, the surgeon may remove the ovaries and fallopian tubes along with the uterus. This process is called total hysterectomy and bilateral (meaning "on both sides") salpingo-oophorectomy (pronounced sal-PING-go ooh-for-EK-toh-mee).
  • When possible, health care providers will try to leave the ovaries in place because of the important role ovaries play in overall health.
  • Health care providers recommend major surgery as a last resort for endometriosis treatment.
  • Having a hysterectomy or salpingo-oophorectomy does not guarantee that the lesions will not return or that the pain will go away. Endometriosis symptoms and lesions may come back in as many as 15% of women who have a total hysterectomy with bilateral salpingo-oophorectomy.

• Surgery to sever pelvic nerves. If the pain is located in the center of the abdomen, health care providers may recommend cutting nerves in the pelvis to lessen the pain. This can be done during either laparoscopy or laparotomy.
• Two procedures are used to sever different nerves in the pelvis.
• Presacral neurectomy (pronounced pree-SEY-kruhl [or pree-SAK-ruhl]) nyoo-REK-tuh-mee). This procedure severs the nerves connected to the uterus. Research shows that this procedure can be useful in relieving pain along the center of the abdomen.
• Laparoscopic uterine nerve ablation (pronounced a-BLEY-shuhn) (LUNA) This procedure involves severing nerves in the ligaments that secure the uterus. However, studies have shown that LUNA did not relieve pain any better than laparoscopy alone. For this reason, it is generally not recommended for treatment of endometriosis-associated pain.
• The American College of Obstetricians and Gynecologists (ACOG) reports several clinical trials that showed these procedures to be ineffective at relieving pain from endometriosis. These procedures are not currently included in the ACOG recommendations for management of endometriosis.

In some cases, hormone therapy is used before or after surgery to reduce pain and/or continue treatment. Current evidence supports the use of an intrauterine device (IUD) containing progestin after surgery to reduce pain. Currently, the only such device approved by the FDA is Mirena®.

Treatments for Infertility Related to Endometriosis

In most cases, health care providers will recommend laparoscopy to remove or vaporize the growths as a way to also improve fertility in women who have mild or minimal endometriosis. Although studies show improved pregnancy rates following this type of surgery, the success rate is not clear.

If pregnancy does not occur after laparoscopic treatment, in vitro fertilization (IVF) may be the best option to improve fertility. Taking any other hormonal therapy usually used for endometriosis-associated pain will only suppress ovulation and delay pregnancy. Performing another laparoscopy is not the preferred approach to improving fertility unless symptoms of pain prevent undergoing IVF. Multiple surgeries, especially those that remove cysts from the ovaries, may reduce ovarian function and hamper the success of IVF.

IVF makes it possible to combine sperm and eggs in a laboratory to make an embryo. Then the resulting embryos are placed into the woman's uterus. IVF is one type of assisted reproductive technology that may be an option for women and families affected by infertility related to endometriosis.

In general, the process of IVF involves the following steps. First, a woman takes hormones to cause "superovulation," which triggers her body to produce many eggs at one time. Once mature, the eggs are collected from the woman, using a probe inserted into the vagina and guided by ultrasound. The collected eggs are placed in a dish for fertilization with a man's sperm. The fertilized cells are then placed in an incubator, a machine that keeps them warm and allows them to develop into embryos. After 3 to 5 days, the embryos are transferred to the woman's uterus. It takes about 2 weeks to know if the process is successful.

Even though the use of hormones in IVF is successful in treating infertility related to endometriosis, other forms of hormone therapy are not as successful. For instance, ACOG does not recommend using oral contraceptive pills or GnRH agonists to treat endometriosis-related infertility. The use of these hormonal agents prevents ovulation and delays pregnancy.

In addition, the hormones used during IVF do not cure the endometriosis lesions, which means that pain may recur after pregnancy and that not all women with endometriosis are able to become pregnant with IVF. Researchers are still looking for hormone treatments for infertility due to endometriosis.