Endometriosis
Basics
Endometriosis is a disease that occurs when the cells of the tissue lining the uterus (the endometrium) travel to other parts of the body and begin to grow Figure 01. Areas affected by this misplaced tissue may include the ovaries, the fallopian tubes, the area behind the uterus, the area between the vagina and rectum, and the pelvis. The misplaced tissue can also grow on the colon, the wall of the abdomen, the appendix, and the lungs.
Figure 01. Female reproductive anatomy
Misplaced tissue, like the uterine lining, reacts to the hormones estrogen and progesterone during the menstrual cycle. Each month, the misplaced tissue builds up to prepare for implantation of an egg. However, as these tissue cells are shed, they have no way of exiting the body. This means that they can build up over time to form lesions, masses, and bands of scar tissue (called adhesions).
Areas where misplaced tissue collects often become inflamed and swollen, are tender to the touch, and can be extremely painful.
Endometriosis tends to be a progressive disease, which means that symptoms usually get worse over time. However, there are no adequate long-term studies of the progression of endometriosis to truly say that is it gets worse in most women.
Endometriosis is usually confirmed and treated by a gynecologist. Your primary care doctor, however, is often the first to recognize endometriosis. A team of specialists, including an endocrinologist and a surgeon, may also become involved in your care.
Causes
Experts are not exactly sure what causes endometriosis Table 01. The cause of endometriosis is not known. Many medical researchers believe that it is due to a process called “retrograde menstruation.” In this process, small amounts of blood and tissue flow backward into the fallopian tubes during menstruation. From there, they leak out and begin to grow in the pelvis and abdomen. This process occurs in almost every woman, but certain women have weaknesses in their immune systems that interfere with their bodies' ability to expel the blood and tissue fragments. Another theory suggests that uterine tissue is carried through the blood vessels or lymphatic system to distant organs, where it implants itself and grows. Studies also show that endometriosis is common in women with a family history of the disease. In addition, if a woman has a first-degree relative with endometriosis, she has a higher risk for more severe disease. Finally, a more controversial theory suggests that endometriosis is caused by exposure to environmental toxins, mainly dioxin, which is a by-product of pesticides, bleached pulp and paper products, and the burning of medical or municipal waste.
Table 1. Possible Causes of Endometriosis
| Cause | What happens |
|---|---|
| Backflow of blood and tissue into the fallopian tubes during menstruation (retrograde menstruation) | Blood and tissue fragments may begin to grow in the pelvis and abdomen after flowing back through the fallopian tubes. Certain women are thought to be more vulnerable to this process because their bodies are unable to expel these fragments naturally. |
| Distribution of uterine tissue through the blood vessels or lymphatic system | Misplaced uterine tissue may travel through the blood vessels or channels of the body's lymph system to distant organs (including the abdomen, lung, and lymph nodes in the pelvis). It then attaches itself and begins to grow. |
| Genes | The gene for endometriosis may be inherited through the mother. Having a twin sister with the disease also increases risk |
| Environmental toxins | Studies in monkeys suggest that long-term exposure to the pesticide dioxin leads to endometriosis. Some studies in women with endometriosis have shown higher levels of dioxin in their bloodstream compared to women without endometriosis. |
Symptoms
Symptoms of endometriosis, such as pain in the lower abdomen, crampy pelvic pain, and pain during intercourse, are unpredictable Table 02. Symptoms of endometriosis differ among women, and can also change over the course of the disease. As many as 30% of women with endometriosis never have any symptoms. However, three types of pain have been described. The first is lower abdominal and deep pelvic pain that continues throughout menstruation. This crampy pain usually starts about two days before the menstrual flow and lasts for several days afterward. The second type of pain is deep, crampy pelvic pain that lasts throughout the cycle; it usually occurs in women with severe endometriosis. Although most women experience some kind of cramping while they are menstruating, crampy pain associated with endometriosis is usually more severe. The third type of pain, pain during intercourse, worsens on deep penetration, and can be triggered by specific sexual positions; it can also worsen during menstruation.
Endometriosis sometimes causes symptoms that seem to be unrelated to the disease, such as difficult bowel movements, painful urination, and shortness of breath. If the colon or stomach is involved, bowel movements may be difficult and painful. There may also be blood in the stool. Likewise, endometrial tissue in the urinary tract can cause blood in the urine or pain while urinating. In the lungs, endometriosis can cause coughing, shortness of breath, and chest pain. Tissue can grow on abdominal scars and cause tenderness and swelling. Sometimes misplaced tissue even grows within the nerves that connect the brain and spinal cord to other organs; this may cause sciatica (pain that begins in the lower back and travels down the back of the thighs) and headaches during menstruation.
The most worrisome symptom of endometriosis is infertility, although the two conditions may not be linked. While there is no evidence that endometriosis directly causes infertility, some 20% to 50% of infertile women have endometriosis. There is no clear explanation for this, although scarring and damage to the reproductive organs may play an important role.
The severity of endometriosis pain depends on where lesions and scar tissue are located, and how far they extend. Pain tends to increase the longer endometriosis goes unrecognized and untreated. Keep in mind that pelvic pain and abdominal pain can have other causes, especially if they do not occur around the menstrual cycle. These causes include tubal pregnancy, urinary tract infection, irritable bowel syndrome, colitis, Crohn's disease, an inflamed fallopian tube, a ruptured ovarian cyst, and scarring behind the uterus and on the walls of pelvis (pelvic adhesions).
Table 2. Symptoms of Endometriosis
| Low abdominal or deep pelvic pain that starts two days before menstrual flow and lasts several days afterward. Described as aching, dull, and crampy, spreading to back and thighs. May also cause nausea, diarrhea, and pressure in the rectum. |
| Same as above but lasting throughout the entire cycle |
| Pelvic pain that occurs during vaginal intercourse, especially during deep penetration or during specific positions. Usually worst just before the menstrual flow but may last throughout the cycle |
| Infertility |
| Difficult, painful bowel movements |
| Blood in stool |
| Pain during urination |
| Blood in urine |
| Coughing |
| Shortness of breath |
| Chest pain |
| Sciatic pain |
| Headaches around the menstrual period |
| Pain, tenderness, or swelling in or around abdominal scars, usually associated with menstruation |
Risk Factors
Endometriosis mainly affects women in their reproductive years (between the ages of 15 and 44) Table 03. Although the exact numbers are unknown, about 10% of women between the ages of 15 and 44 (approximately 5 million women) are affected by endometriosis. Certain factors appear to increase risk. For example, endometriosis is more common in women with shorter menstrual cycles (7 days), and spotting before their periods begin. It is less common among women who have had at least one pregnancy, although this protection seems to decrease as the time between pregnancies increases.
Endometriosis also appears to be related to estrogen levels. Estrogen is responsible for the thickening of the uterine lining during the menstrual cycle. Some lifestyle factors seem to reduce the risk for endometriosis by reducing estrogen levels. For example, exercising regularly and maintaining a lower percentage of body fat ratio seem to reduce risk because they lower the amount of estrogen circulating in the body at any given time.
A family history of endometriosis increases risk. Endometriosis is inherited through the mother. Also, studies show that a woman who has an identical twin with endometriosis is four times more likely than a woman in the general population to have endometriosis herself. For nonidentical twins, the risk is twice as high.
Table 3. Factors Affecting Risk for Endometriosis
| Increases risk |
| Menstrual periods >7days |
| Menstrual cycle |
| Spotting before the menstrual period begins |
| Increased estrogen levels in the blood |
| Having a mother with endometriosis |
| Having an identical twin with endometriosis (quadruples the risk) |
| Having a nonidentical twin with endometriosis (doubles the risk) |
| Decreases risk |
| A previous pregnancy |
| Exercise |
| A low body fat ratio |
Diagnosis
Endometriosis is a disease that occurs when the cells of the tissue lining the uterus (the endometrium) travel to other parts of the body and begin to grow Figure 01. Areas affected by this misplaced tissue may include the ovaries, the fallopian tubes, the area behind the uterus, the area between the vagina and rectum, and the pelvis. The misplaced tissue can also grow on the colon, the wall of the abdomen, the appendix, and the lungs.Figure 01. Female reproductive anatomy
Misplaced tissue, like the uterine lining, reacts to the hormones estrogen and progesterone during the menstrual cycle. Each month, the misplaced tissue builds up to prepare for implantation of an egg. However, as these tissue cells are shed, they have no way of exiting the body. This means that they can build up over time to form lesions, masses, and bands of scar tissue (called adhesions).
Areas where misplaced tissue collects often become inflamed and swollen, are tender to the touch, and can be extremely painful.
Endometriosis tends to be a progressive disease, which means that symptoms usually get worse over time. However, there are no adequate long-term studies of the progression of endometriosis to truly say that is it gets worse in most women.
Endometriosis is usually confirmed and treated by a gynecologist. Your primary care doctor, however, is often the first to recognize endometriosis. A team of specialists, including an endocrinologist and a surgeon, may also become involved in your care.
Experts are not exactly sure what causes endometriosis Table 01. The cause of endometriosis is not known. Many medical researchers believe that it is due to a process called “retrograde menstruation.” In this process, small amounts of blood and tissue flow backward into the fallopian tubes during menstruation. From there, they leak out and begin to grow in the pelvis and abdomen. This process occurs in almost every woman, but certain women have weaknesses in their immune systems that interfere with their bodies' ability to expel the blood and tissue fragments. Another theory suggests that uterine tissue is carried through the blood vessels or lymphatic system to distant organs, where it implants itself and grows. Studies also show that endometriosis is common in women with a family history of the disease. In addition, if a woman has a first-degree relative with endometriosis, she has a higher risk for more severe disease. Finally, a more controversial theory suggests that endometriosis is caused by exposure to environmental toxins, mainly dioxin, which is a by-product of pesticides, bleached pulp and paper products, and the burning of medical or municipal waste.
Table 1. Possible Causes of Endometriosis
| Cause | What happens |
|---|---|
| Backflow of blood and tissue into the fallopian tubes during menstruation (retrograde menstruation) | Blood and tissue fragments may begin to grow in the pelvis and abdomen after flowing back through the fallopian tubes. Certain women are thought to be more vulnerable to this process because their bodies are unable to expel these fragments naturally. |
| Distribution of uterine tissue through the blood vessels or lymphatic system | Misplaced uterine tissue may travel through the blood vessels or channels of the body's lymph system to distant organs (including the abdomen, lung, and lymph nodes in the pelvis). It then attaches itself and begins to grow. |
| Genes | The gene for endometriosis may be inherited through the mother. Having a twin sister with the disease also increases risk |
| Environmental toxins | Studies in monkeys suggest that long-term exposure to the pesticide dioxin leads to endometriosis. Some studies in women with endometriosis have shown higher levels of dioxin in their bloodstream compared to women without endometriosis. |
Symptoms of endometriosis, such as pain in the lower abdomen, crampy pelvic pain, and pain during intercourse, are unpredictable Table 02. Symptoms of endometriosis differ among women, and can also change over the course of the disease. As many as 30% of women with endometriosis never have any symptoms. However, three types of pain have been described. The first is lower abdominal and deep pelvic pain that continues throughout menstruation. This crampy pain usually starts about two days before the menstrual flow and lasts for several days afterward. The second type of pain is deep, crampy pelvic pain that lasts throughout the cycle; it usually occurs in women with severe endometriosis. Although most women experience some kind of cramping while they are menstruating, crampy pain associated with endometriosis is usually more severe. The third type of pain, pain during intercourse, worsens on deep penetration, and can be triggered by specific sexual positions; it can also worsen during menstruation.
Endometriosis sometimes causes symptoms that seem to be unrelated to the disease, such as difficult bowel movements, painful urination, and shortness of breath. If the colon or stomach is involved, bowel movements may be difficult and painful. There may also be blood in the stool. Likewise, endometrial tissue in the urinary tract can cause blood in the urine or pain while urinating. In the lungs, endometriosis can cause coughing, shortness of breath, and chest pain. Tissue can grow on abdominal scars and cause tenderness and swelling. Sometimes misplaced tissue even grows within the nerves that connect the brain and spinal cord to other organs; this may cause sciatica (pain that begins in the lower back and travels down the back of the thighs) and headaches during menstruation.
The most worrisome symptom of endometriosis is infertility, although the two conditions may not be linked. While there is no evidence that endometriosis directly causes infertility, some 20% to 50% of infertile women have endometriosis. There is no clear explanation for this, although scarring and damage to the reproductive organs may play an important role.
The severity of endometriosis pain depends on where lesions and scar tissue are located, and how far they extend. Pain tends to increase the longer endometriosis goes unrecognized and untreated. Keep in mind that pelvic pain and abdominal pain can have other causes, especially if they do not occur around the menstrual cycle. These causes include tubal pregnancy, urinary tract infection, irritable bowel syndrome, colitis, Crohn's disease, an inflamed fallopian tube, a ruptured ovarian cyst, and scarring behind the uterus and on the walls of pelvis (pelvic adhesions).
Table 2. Symptoms of Endometriosis
| Low abdominal or deep pelvic pain that starts two days before menstrual flow and lasts several days afterward. Described as aching, dull, and crampy, spreading to back and thighs. May also cause nausea, diarrhea, and pressure in the rectum. |
| Same as above but lasting throughout the entire cycle |
| Pelvic pain that occurs during vaginal intercourse, especially during deep penetration or during specific positions. Usually worst just before the menstrual flow but may last throughout the cycle |
| Infertility |
| Difficult, painful bowel movements |
| Blood in stool |
| Pain during urination |
| Blood in urine |
| Coughing |
| Shortness of breath |
| Chest pain |
| Sciatic pain |
| Headaches around the menstrual period |
| Pain, tenderness, or swelling in or around abdominal scars, usually associated with menstruation |
Endometriosis mainly affects women in their reproductive years (between the ages of 15 and 44) Table 03. Although the exact numbers are unknown, about 10% of women between the ages of 15 and 44 (approximately 5 million women) are affected by endometriosis. Certain factors appear to increase risk. For example, endometriosis is more common in women with shorter menstrual cycles (7 days), and spotting before their periods begin. It is less common among women who have had at least one pregnancy, although this protection seems to decrease as the time between pregnancies increases.
Endometriosis also appears to be related to estrogen levels. Estrogen is responsible for the thickening of the uterine lining during the menstrual cycle. Some lifestyle factors seem to reduce the risk for endometriosis by reducing estrogen levels. For example, exercising regularly and maintaining a lower percentage of body fat ratio seem to reduce risk because they lower the amount of estrogen circulating in the body at any given time.
A family history of endometriosis increases risk. Endometriosis is inherited through the mother. Also, studies show that a woman who has an identical twin with endometriosis is four times more likely than a woman in the general population to have endometriosis herself. For nonidentical twins, the risk is twice as high.
Table 3. Factors Affecting Risk for Endometriosis
| Increases risk |
| Menstrual periods >7days |
| Menstrual cycle |
| Spotting before the menstrual period begins |
| Increased estrogen levels in the blood |
| Having a mother with endometriosis |
| Having an identical twin with endometriosis (quadruples the risk) |
| Having a nonidentical twin with endometriosis (doubles the risk) |
| Decreases risk |
| A previous pregnancy |
| Exercise |
| A low body fat ratio |
Your doctor will take a detailed medical history to help determine whether you have endometriosis, and to rule out other possible illnesses. Details about your symptoms, including when they first started, how long they last, and where in the body they occur, can help to confirm or rule out endometriosis. Severe symptoms that occur suddenly usually indicate another type of illness.
A physical examination can sometimes help your doctor locate definite signs of endometriosis. Physical examination findings are normal in about 50% of women with endometriosis. Other times, the doctor may find nodules and tissue masses on the upper part of the vagina, on the back of the uterus and cervix, and between the rectum and vagina. These may be tender when touched. The uterus may also be tilted upward because of scarring behind the uterus and on the pelvic walls.
The only way to confirm endometriosis is through a procedure called laparoscopy Figure 02. There are no laboratory or blood tests that are sensitive enough to diagnose endometriosis. Your doctor may use imaging studies, such as ultrasonography or magnetic resonance imaging, to look at tissue masses felt during the physical examination and to determine which areas of the body are affected. However, the only way to absolutely confirm a diagnosis is by performing laparoscopy. In this procedure, a microscope-like, tube-shaped instrument is inserted into the abdomen just below the navel. Laparoscopy can be done in the hospital or in an outpatient setting, and is usually reserved for women who do not respond to treatment of their pain.
Figure 02. Laparoscopy
Prevention and Screening
Treatment
Stress reduction techniques, such as physical exercise, yoga, or meditation, may improve the ability to cope with endometriosis. Studies confirm that stress has a negative effect on disease. In patients with endometriosis, stress may trigger excess adrenal stress hormones. These hormones have a direct effect on heart rate and blood flow, and high levels can impair the body's ability to limit scarring and inflammation. Fortunately, stress reduction activities like yoga and meditation can help promote a sense of calm, slow heart rate, relax tense muscles (which often contribute to pain), and foster a sense of well-being. Likewise, physical exercise, in addition to reducing the amount of estrogen circulating in the body, can help relieve stress.
Warm baths and heating pads may help relax muscles and provide temporary pain relief. Endometriosis pain is often crampy and located deep in the pelvic muscles. Soaking in warm baths or using heating pads may help to temporarily relieve pain, or at least lessen it for short periods of time. Both of these methods can also help reduce stress.
A diet that is rich in fiber (e.g., whole grains, fruits, and vegetables) is important for good health, and may also reduce the levels of estrogen circulating in the body. Although further study is needed, some evidence suggests that dietary fiber can reduce the amount of estrogen circulating in the body. This may be because fiber binds with estrogen and carries it out of the body through the digestive tract. Therefore, a diet that is rich in fiber may help to reduce symptoms in some women with endometriosis. However, doctors always recommend eating a diet that is rich in whole grains, fruits, and vegetables, and low in saturated fat to maintain overall health.
Your doctor is the best source of information on the drug treatment choices available to you.
Many women with endometriosis find that support groups or psychotherapy help them to cope better with their illness. Seeking out and joining other women who suffer from the pain and frustrations of endometriosis can improve peace of mind and ability to cope. Learning that others have similar feelings and personal struggles often provides some sense of control over a confusing illness, and can help you regain your self-esteem. In addition, there is some evidence that support groups can reduce pain and lessen depression.
The same is true for psychotherapy. A type of therapy called cognitive-behavioral therapy (CBT) is especially useful. CBT looks at the emotions caused by especially distressing symptoms and examines what they can mean to a person. For example, many women with pain blame themselves for possibly delaying childbirth or for avoiding sexual intercourse. This guilt and self-blame can leave them feeling victimized or out of control, and can cause anxiety and depression as well as an increased awareness of pain and emotions. On the other hand, women who recognize these feelings and their effects may develop a more active approach to coping, and find it easier to live with endometriosis.
Surgery is usually reserved for women with severe symptoms that do not respond to medical treatment. If medical treatment fails to relieve severe symptoms, your doctor may recommend surgery. Women with endometriosis may also want to consider surgery if they are unable to become pregnant after one year. Laparoscopy, the most common surgical procedure for treating endometriosis, is the same procedure that is used to confirm the diagnosis. Often, surgeons who perform the procedure for confirmation are able to remove implanted endometrial tissue masses, bands of scar tissue (called adhesions), and tissue lesions at the same time, making a second procedure unnecessary. During surgery, the doctor can also correct any changes in the structure of the reproductive organs that may have been caused by endometriosis.
Laparoscopy is a simple procedure that can be done in the hospital or in an outpatient setting; it involves the use of a thin, lighted, microscope-like tube. The tube is inserted into the abdomen just below the navel. Laparoscopy requires only one to four small incisions (about ¼ to ½ inch long). Recovery may take a few days, but most women who undergo this procedure can return to normal activities within a week.
If there is extensive damage, the surgeon may recommend removal of one or both ovaries or removal of the uterus. He or she may also choose to cut the nerves that lie behind that uterus to help provide pain relief. Each of these procedures has risks and benefits that require thorough discussions with your endometriosis management team.
Your surgeon may suggest an older procedure called laparotomy. Laparotomy is often conducted when a patient has extensive tissue masses, especially in the bowel or abdomen. Unlike laparoscopy, laparotomy is major abdominal surgery, requires a hospital stay of at least three to five days, and involves a recovery time of up to six weeks.
Chinese medicine, including acupuncture and herbs, has been recommended to relieve the pain associated with endometriosis. Although further studies are needed, Chinese medicine techniques reportedly relieve endometriosis-related pain in some women. Acupuncture is one such technique. In acupuncture, needles are placed into energy points located along channels that run vertically up and down the body. The goal is to balance and restore the flow of Qi (pronounced “chee”), or life energy force. Practitioners of Chinese medicine believe that when Qi becomes unbalanced, or its flow is interrupted, illness results. Different combinations of herbs are often used along with acupuncture to further enhance treatment and, at times, to speed recovery.
When seeking any type of complementary medicine practitioner, make certain that he or she has received proper accreditation and training. Most types of complementary practices, including acupuncture, have national associations or organizations that offer such credentials. The National Center for Complementary & Alternative Medicine, a division of the National Institutes of Health, is a good starting point for general information about complementary medicine (http://nccam.nih.gov/nccam/fcp/faq/index.html). In addition, the University of Pittsburgh maintains a complementary medicine home page that includes links to mailing lists, newsgroups, government resources, and practitioner directories (www.pitt.edu/~cbw/altm.html). Information on acupuncture can be obtained from the American Association of Oriental Medicine (http://aaom.org) or from Acupuncture.com (www.acupuncture.com).
If endometriosis has spread to the abdomen, bowels, and distant organs, a more complete physical examination and assessment are necessary. During the history-taking and physical, your provider can often determine whether endometriosis has spread to other organs. If it has, a more detailed investigation may be necessary, including laboratory tests, imaging studies, and surgical diagnosis of a variety of body systems. If endometriosis is extensive, the goal of therapy will be to correct the symptoms related to tissue growth and organ damage in the specific affected areas.
With treatment, most women experience some pain relief. Although there is no cure for endometriosis, medical and surgical treatments can successfully reduce and sometimes eliminate pain and other symptoms. Treatment can also improve the chance of becoming pregnant. However, symptoms tend to recur in roughly 34% to 74% of women, depending on the treatment and the extent of disease. Recurrence of symptoms is possible even if the uterus is surgically removed, although the rates are much lower (approximately 5% to 8%). Fortunately, symptoms tend to disappear once menopause is reached. This is because the growth of endometrial tissue depends on estrogen, which is no longer produced after menopause.
An open doctor-patient relationship is important in endometriosis. Treatment of endometriosis is usually provided for limited periods of time. During this time period, you may be asked to contact your doctor if your symptoms continue, or if they worsen. Likewise, your doctor will want to meet with you at the end of the treatment period to assess your progress and determine whether further steps should be taken. That's why an open relationship is so important. Your doctor and other members of your endometriosis team are partners in your care. They will want to know how treatment is going and if you have any questions or concerns.