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Endometriosis In-Depth Report
Background
Endometriosis is a condition in which the cells that line the uterus grow outside of the uterus. The condition can interfere with a woman's fertility and ability to become pregnant. Endometriosis can also cause severe pelvic pain, especially during menstruation.
Endometriosis is a common gynecological condition. It was described in medical literature more than 300 years ago and has since been recognized as a chronic, painful, and often progressive disease in women. However, the causes of endometriosis are unknown, it is widely variable in symptoms and severity, and it is difficult to diagnose. In fact, some experts believe that endometriosis is actually several disorders, not just one.
ENDOMETRIAL IMPLANTS
Endometriosis. Endometriosis occurs when cells from the mucus membrane lining the uterus (endometrium) form implants that attach, grow, and functionoutside the uterus, generally in the pelvic region.
Endometrial cells contain receptors that bind to estrogen and progesterone, which promote uterine growth and thickening. During endometriosis these cells become implanted in organs and structures outside the uterus, where these hormonal activities continue to occur, causing bleeding and scarring.
Endometrial implants vary widely in size, shape, and color. Over the years, they may diminish in size or disappear, or they may grow.
- Early implants are usually very small and look like clear pimples.
- If they continue to grow they may form flat injured areas (lesions), small nodules, or cysts called endometriomas, which can range from sizes smaller than a pea to larger than a grapefruit.
- Implants also vary in color; they may be colorless, red, or very dark brown. These so-called chocolate cysts are endometriomas filled with thick, old, dark brown blood that usually appear on the ovaries.
LOCATION OF IMPLANTS
Implants can form in many areas, most commonly in the following:
- The peritoneum. This is the smooth surface lining that covers the entire wall of the abdomen and folds over inner organs in the pelvic area.
- On or next to the ovaries
Less commonly they occur in other areas:
- Cul-de-sac, an area between the uterus and rectum
- Connective tissue that supports the uterus (called the uterosacral ligaments)
- Vagina
- Fallopian tube
- Urinary tract (in about 20% of cases, usually without causing symptoms)
- Gastrointestinal tract (in 12 - 37% of patients)
Very rarely, they appear in areas far from the pelvis, including the lungs and even the arms and thighs.
PROCESS OF ENDOMETRIOSIS
The process of endometriosis mimics menstruation at certain stages:
- Each month, the exiled endometrial implants respond to the monthly cycle just as they would in the uterus. They fill with blood, thicken, break down and bleed.
- Products of the endometrial process cannot be shed through the vagina as menstrual blood and debris are. Instead, the implants develop into collections of blood that form cysts, spots, or patches.
- Lesions may grow or reseed as the cycle continues.
The lesions are not cancerous, but they can develop to the point that they cause obstruction or adhesions (web-like scar tissue) that attach to nearby organs, causing pain, inflammation, and sometimes infertility.
Causes
Endometriosis occurs among women all over the world, but researchers have been unable to determine its cause. A combination of genetic, biologic, and environmental factors appear to work together to trigger the initial process, produce implantation, and cause subsequent reseeding and spreading of the implants.
INITIAL CAUSE AND DISTRIBUTION OF ENDOMETRIOSIS
Retrograde Menstruation. One explanation for the development of endometriosis implants involves retrograde menstruation. This occurs during a woman's period, when menstrual tissue flows backward through the fallopian tubes rather than out through the vagina. Early theorists suggested that, in some cases, the redistributed uterine tissue attached and grew in areas outside the uterus, forming endometriosis implants. This theory does not fully explain endometriosis, however. Many women have some retrograde menstruation, but not all of them develop endometrial cysts. Consequently, other factors must explain why uterine tissue becomes implanted and grows in areas outside the uterus.
Lymphatic Transport. This theory suggests that endometriosis first develops when uterine tissue is separated and transported to other organs through the lymphatic system or the bloodstream.
Candida. There is absolutely no evidence that endometriosis is caused by candida (commonly called yeast infection), as claimed in some consumer publications.
CAUSES OF PERSISTENCE AND GROWTH OF ENDOMETRIOSIS
There are two basic mysteries surrounding the persistence and growth of endometriosis:
- Why do endometrial implants survive the attack by the immune system, which is typically launched against any foreign presence in the body?
- How do these endometrial travelers develop new blood vessels and implant themselves in other locations?
Impaired Immune System. Some research is focused on possible immune disorders in women with endometriosis. One theory proposes that women with endometriosis have fewer natural killer (NK) cells, which are factors in the immune system important for surveillance. In their absence, the immune system is weakened and may allow endometrial tissue to invade and take root. A recent study suggests that other types of immune system cells are also underactive in women with endometriosis, allowing the woman's body to tolerate the implanted tissue.
Some evidence suggests that endometriosis represents an autoimmune condition, in which the immune system launches an attack on its own cells and tissue. Much of the evidence rests on the relatively high incidence of other inflammatory autoimmune disorders (such as multiple sclerosis, rheumatoid arthritis, and lupus) that occur in women with endometriosis. It is unclear, however, how this response relates to endometriosis itself and whether endometriosis should be treated as an autoimmune condition.
Growth Factors and Angiogenesis. Macrophages also produce growth factors, which are of particular interest because they play important roles inangiogenesis, a natural process by which new blood vessels form.
Vascular endothelial growth factor (VEGF) is secreted by endometrial cells, and so is of special interest. Under normal conditions, VEGF is secreted within the uterus. When oxygen levels drop following menstruation and blood loss, VEGF levels rise and promote the growth of new blood vessels. This process is important for repairing the uterus following menstruation.
When endometrial cells land outside the uterus, however, investigators theorize that this same process occurs with unfortunate results. The cells secrete VEGF when they are deprived of blood and oxygen, which in turn stimulates blood vessel growth. In this case, however, blood vessel growth serves to promote implantation outside the womb.
Other growth factors involved in angiogenesis that may play a role in endometriosis include transforming growth factors (such as TGF-beta), platelet-derived endothelial growth factor (PD-ECGF), and tumor necrosis growth factors.
Inflammatory Response. The damage, infertility, and pain produced by endometriosis may be due to an overactive response by the immune system to the early presence of endometrial implants. The body, perceiving the implants as hostile, launches an attack. Levels of large white blood cells called macrophages are elevated in endometriosis. Macrophages produce very potent factors, which include cytokines (particularly those known as interleukins) and prostaglandins. Such factors are known to produce inflammation and damage in tissues and cells.
GENETIC FACTORS
The incidence of endometriosis in women who have a mother or sister with the disorder may be up to 10 times higher than average. Although there has been no consistent genetic anomaly identified yet, there are several candidates being investigated.
Symptoms
Timing of Pain. Pain at the time of menstruation (dysmenorrhea) is the primary symptom and occurs in nearly all girls and women with endometriosis. Studies suggest that endometriosis is the cause of about 15% of cases of pain in the pelvic region in women. Most women with endometriosis report pain within 2 days after their menstrual periods start.
In addition to menstruation, endometrial pain can occur at other times of the month. Adolescents are more likely to have pain that occurs both during their periods and at other times in the cycle, while in older women endometrial pain is more likely to occur during menstruation.
About half of women with endometriosis report pain in the middle of the menstrual cycle. (A sharp pain during ovulation may be due to an endometrial cyst located in the fallopian tube that ruptures as the egg passes through.) About 20% of women report continuous pain throughout the cycle. In addition, many women with endometriosis have pain during sex.
Location of Pain. Pain occurs in the pelvic area (the lower part of the trunk of the body) in nearly all women with endometrial pain. The pain is often a severe cramping that occurs on both sides of the pelvis, radiating to the lower back and rectal area and even down the legs.
Occasionally, however, pain may also occur in other regions if endometriosis affects other part of the pelvic area, such as the bladder or intestine.
Severity of Pain. The severity of the pain also varies widely and does not appear to be related to the extent of the endometriosis itself. In other words, a woman can have very small or few implants and have severe pain, while those with extensive endometriosis may have very few signs of the disorder except for infertility. Large cysts can rupture and cause very severe pain at any time.
OTHER SYMPTOMS
Patients may have other symptoms, including:
- Joint and muscle aches
- Fatigue
- Bloating
- Nausea
- Dizziness
- Heavy menstrual bleeding
- Headaches
- Depression and malaise (feeling generally low)
- Sleep problems
- Cyclical abdominal pain or intermittent constipation and diarrhea
- Painful or difficult urination (dysuria)
- Blood in the urine (hematuria)
Risk Factors
Endometriosis affects at least 5.5 million women in North America and millions more worldwide. An estimated 2 - 4% of all premenopausal adult women have detectable endometriosis, and over a third of these women have noticeable pain. Because many women with endometriosis have no symptoms, the actual percentage of premenopausal women with the disorder may be as high as 15%. Some experts believe endometriosis may be responsible for 45 - 70% of chronic menstrual pain in adolescence.
Age. Endometriosis can occur in women of all ages. It has been reported in girls as young as age 8 (and has been documented before the onset of menstruation), and in women over age 75, with the average age being 25 - 29. About 40 - 60% of women with endometriosis report symptoms before age 25.
Ethnic Groups. Endometriosis is most common among Asian women, with Caucasians next. It is reported least frequently in African-American women.
HEIGHTENED MENSTRUAL EFFECTS
Women at higher risk for endometriosis tend to have more problems with menstruation. Those at higher risk have a shorter than normal cycle, heavier periods, and longer periods. Heavier, more frequent periods, or longer exposure may simply make the risk for retrograde menstruation more likely. (This is the condition in which menstrual fluid flows backward and is believed to be at least partially responsible for the initial development of endometriosis.) Menopause usually brings an end to mild-to-moderate endometriosis, although if women with a history of endometriosis take hormone replacement therapy (HRT), the condition may be reactivated.
NOT HAVING CHILDREN
Not having children has been associated with a greater risk for endometriosis. Some evidence suggests that early pregnancy may be protective against endometriosis because the cervix becomes dilated during labor, which reduces the risk for retrograde menstruation (menstrual backflow). On the other hand, endometriosis itself can increase the risk for infertility, so it may be a cause rather than a result of not having children. Some studies have found no protection against endometriosis with pregnancy, although women with the condition find relief from symptoms during pregnancy.
FAMILY HISTORY
Some experts report that almost 7% of first-degree female relatives of endometriosis patients also develop it. A family history of endometriosis, especially in a mother or sister, not only puts women at high risk for the condition but possibly a more severe manifestation of it as well.
UTERINE ABNORMALITIES
Women may also be at higher risk for endometriosis if they were born with uterine abnormalities that obstruct the normal outflow of blood and cause retrograde menstruation.
There have been reports of endometriosis developing after cesarean sections, including implants developing in surgical scars and in the urinary tract. Some experts believe endometriosis should be suspected in women with urinary tract symptoms and a history of cesarean section.
ASSOCIATED MEDICAL CONDITIONS
Various disorders occur in greater rates in women who have endometriosis. In some cases, these disorders and endometriosis may be caused by common factors, but it is not clear what they are.
They include certain cancers, systemic lupus erythematosus, rheumatoid arthritis, multiple sclerosis, thyroid disorders, fibromyalgia, chronic fatigue syndrome, allergies and asthma, and possibly diabetes.
Complications
Endometriosis is a chronic disease that is difficult to diagnose and treat. Without treatment, endometriosis gets progressively worse in 65 - 80% of patients. Even with treatment, endometriosis continues to advance in 20% of patients. Cysts and implants may grow and spread to other parts of the pelvis, and in very severe cases, to the urinary or intestinal tracts. Eventually adhesions may form. These are dense, web-like structures of scar tissue that can attach to nearby organs and cause pain, infertility, and intestinal obstruction.
PAIN
Pain is the most common complaint for women with endometriosis, and it can significantly impair the quality of life. The pain experienced around menstruation can be so debilitating that up to 25% of women with the condition are incapacitated for 2 - 6 days of each month. In severe cases, regular activities may be curtailed for up to 2 weeks per month. Sleeping problems have been reported in 75% of patients, mostly due to pain.
INFERTILITY
Endometriosis may account for as many as 30% of infertility cases. Some evidence suggests that between 30 - 50% of women with endometriosis are infertile. Often, however, it is difficult to determine if endometriosis is the primary cause of infertility, particularly in women who have mild endometriosis. In an attempt to determine the chances for infertility with endometriosis, researchers have come up with a staging system based on findings during diagnostic surgery.
Endometriosis rarely causes an absolute inability to conceive, but it can contribute to infertility both directly and indirectly.
Direct Effect of Endometrial Cysts. Endometrial cysts may directly prevent infertility in a number of ways:
- If implants occur in the fallopian tubes, they may block the egg's passage.
- Implants that occur in the ovaries prevent the release of the egg.
- Severe endometriosis can eventually form rigid webs of scar tissue (adhesions) among the uterus, ovaries, and fallopian tubes, thereby preventing the transfer of the egg to the tube.
Immune Factors and the Infla mmatory Response. Researchers are focusing on defects in the immune system that not only may be responsible for endometriosis in the first place but also may cause the infertility associated with endometriosis. Even in early stage endometriosis, investigators have observed increased immune system activity. It is possible that in such cases, the body perceives these foreign endometrial implants as hostile, and launches an attack.
Other Conditions Linking Endometriosis and Infertility. Researchers have noted unusually low levels of specific substances that enable a fertilized egg to adhere to the uterine lining. Such abnormalities are more often a factor in infertility in women with mild-to-moderate endometriosis than in those with severe cases.
One study found that the eggs in women with endometriosis appeared to have more genetic abnormalities than those in women without the disorder.
EFFECTS ON OTHER PARTS OF THE PELVIC REGION
Implants can also occur in the bladder (although rare) and cause pain and even bleeding during urination. Implants also sometimes form in the intestine and cause painful bowel movements, constipation, or diarrhea. Hormonal treatments, the standard therapies for endometriosis, are not helpful in such cases, and surgery may be needed.
CANCERS
Endometriosis has characteristics that are similar to cancerous tumors, including cellular invasion of other tissues, unrestrained growth, development of new blood vessels, and impaired ability of cells to naturally self-destruct. It is not a malignant disease, however, but experts have been debating for years whether it represents any significant danger.
The possible risks for ovarian and endometrial cancers are of specific concern. Some researchers have identified certain genetic mutations that may transform endometrial cells into ovarian or endometrial cancers in rare cases. Some evidence suggests that ovarian cancer associated with endometriosis may differ from most ovarian cancer cases, and, in fact, have a better outlook.
Of additional concern are studies suggesting that women with endometriosis have a higher risk for other cancers, particularly for early-onset breast cancer and non-Hodgkin's lymphoma (NHL).
EMOTIONAL EFFECTS
The emotional effect of severe endometriosis can be almost as devastating as the pain. It can affect marriage and work. Patients may feel periods of depression, irritability, anxiety, anger, and hopelessness.
Diagnosis
Although endometriosis is the most commonly diagnosed uterine disorder, it is often misdiagnosed or missed altogether. Since a clear diagnosis requires visualization and biopsy during laparoscopy, the diagnosis may be delayed in any patients.
GENERAL APPROACH TO DIAGNOSING ENDOMETRIOSIS
Endometriosis frequently begins to develop in adolescence, but it is not typically diagnosed until a woman is in her mid-20s or early 30s. There are a number of reasons for this:
- The symptoms vary widely, and sometimes do not occur at all. Some women do not know they have endometriosis until they fail to become pregnant and seek help for infertility.
- Pain in the pelvic or abdominal area can be caused by so many conditions that it is often difficult to pin down the precise cause.
Endometriosis should be highly suspected in women with severe menstrual cramps who are also infertile. Laparoscopy, an invasive diagnostic procedure, is the only definitive method for diagnosing endometriosis. However, a trial using one of several hormonal therapies is usually sufficient to confirm or rule out endometriosis. Such drugs include danazol, GnRH agonists, and progestins.
RULING OUT CONDITIONS WITH SIMILAR SYMPTOMS
Many conditions cause pelvic pain. In many cases, the cause is unknown, and the condition often resolves on its own. However, some causes of pelvic pain can be serious and should be ruled out during a work-up for endometriosis.
Primary Dysmenorrhea. Primary dysmenorrhea is recurrent pelvic pain associated with menstruation. Dysmenorrhea is common in many women.
Adenomyosis. A condition called adenomyosis occurs when nodules (knots) of endometrial tissue develop within the deep muscle layers of the uterus. This disorder is often classified with endometriosis, but adenomyosis is a different disease. (Endometriosis occurs when endometrial tissue grows and functionsoutside the uterus.) Adenomyosis is a significant cause of severe pelvic pain and menstrual irregularities. Until recently adenomyosis was diagnosed only after a hysterectomy, but advanced imaging techniques using ultrasound and magnetic resonance imaging scans may be able to detect it. Women who have had surgery for endometriosis, yet continue to suffer from menstrual and pelvic pain, may actually have adenomyosis.
Adenomyosis typically occurs in women who have uterine fibroids, women age 40 - 50, and women who have had children.
Other Causes of Pelvic Pain. Many conditions cause pelvic pain that may or may not be related to menstruation. Some causes of pelvic pain can be serious and should be ruled out:
- Uterine fibroids
- Pelvic inflammatory disease (which is a result of infections in the pelvic area)
- Miscarriage
- Ectopic pregnancy
- Pelvic adhesions
- Pelvic cancer (rare)
- Uterine polyps
- The use of an intrauterine device (IUD) for contraception
Conditions that may mimic symptoms of endometriosis but which are unrelated to problems in the reproductive organs include:
- Severe kidney or urinary tract infections
- Celiac disease
- Appendicitis
- Interstitial cystitis
- Inflammatory bowel disease
- Diverticulitis
- Irritable bowel syndrome
PHYSICAL EXAMINATION
The doctor may be able to feel tender masses or nodules during a pelvic examination, but these signs can indicate many conditions and do not necessarily mean endometriosis is present.
DIAGNOSTIC PROCEDURES
Laparoscopy. Diagnostic laparoscopy, an invasive surgical procedure, is currently the only definitive method for diagnosing endometriosis. Laparoscopy normally requires a general anesthetic, although the patient can go home the same day.
The procedure is as follows:
- The surgeon makes tiny abdominal incisions through which a fiber optic tube, equipped with small camera lenses, is inserted. The doctor uses these devices to view the uterus, ovaries, tubes, and peritoneum (lining of the pelvis) on a video monitor.
- Carbon dioxide gas is injected into the abdomen, distending it and pushing the bowel away so that the doctor has a wider view.
- A blue dye may be flushed through the fallopian tubes to determine blockage; if there is an obstruction, the dye will not flow through the tube.
- If the surgeon needs to remove small endometrial cysts or other lesions during the procedure (operative laparoscopy), tiny surgical instruments are passed through a tube.
The procedure is used for finding and staging endometriosis to determine its severity. Sometimes, the procedure itself will restore fertility in women with endometriosis.
Hysteroscopy. Hysteroscopy is a procedure that may be used to detect the presence of fibroids, polyps, or other causes of bleeding or pelvic pain.
IMAGING TECHNIQUES
An ultrasound is performed in cases where other conditions are suspected, such as uterine fibroids, ovarian cysts, or ectopic pregnancy. This non-invasive imaging technique can detect endometriomas, cysts that are usually located on the ovaries and filled with thick dark blood. Ultrasound can also pick up cysts larger than 1 cm (about 1/3 inch), but will miss smaller cysts, or small and shallow endometrial implants on the surface of ovaries, or on the peritoneum (lining of the pelvis).
Other imaging techniques, such as computed tomography (CT) scanning or magnetic resonance imaging (MRI), may occasionally be used. However, neither CT scans nor MRI scans are very sensitive for diagnosing endometriosis in many patients.
BIOLOGIC MARKERS FOR ENDOMETRIOSIS
Investigators are studying certain chemicals detected in blood tests that may prove to help diagnose endometriosis and so avoid invasive diagnostic procedures in many women. Among the most studied to date are CA-125 and CA19-9. Both are elevated in women with severe endometriosis. Higher levels of both chemicals occur in many other diseases, however, including ovarian cancer, so results using this test alone do not provide enough information for a definitive diagnosis of endometriosis.
STAGING ENDOMETRIOSIS
During laparoscopy, the surgeon determines the number, size, and location of endometrial implants and adhesions. This information helps rank endometriosis by the extent of the disease and give the likelihood of infertility:
- Minimal (stage I)
- Mild (stage II)
- Moderate (stage III)
- Severe (stage IV)
A number of experts do not believe these categories are useful, because they often do not relate to the intensity of the pain, or to treatment success rates.
Some experts believe it is more accurate to further categorize endometriosis by the depth of penetration:
- Superficial Endometriosis. Endometriosis that lies more on the surface is more highly associated with infertility than deep implants.
- Infiltrative Endometriosis. Implants deeper than 5 - 6 mm; deep implants are believed to be the best indicator of progression and severe symptoms.
Treatment
There is no perfect way of managing endometriosis. The three basic treatment approaches are:
- Watchful waiting (to relieve symptoms)
- Hormonal therapy (to reduce endometrial implants)
- Surgery (to reduce endometrial implants, restore fertility, or possibly cure the condition)
The choice depends on a number of factors, including the woman's symptoms, her age, whether fertility is a factor, and the severity of the disease.
WATCHFUL WAITING
In general, watchful waiting is a good initial choice for:
- Women with mild pain who, if fertile, do not wish to become pregnant. If women with mild endometriosis wish to become pregnant, the doctor may recommend unprotected sex for 6 months to year. If pregnancy does not occur, then treatment may be started.
- Women approaching menopause.
Some experts believe that early diagnosis and treatment in young women without symptoms might prevent some cases of infertility later on. Unfortunately, however, some treatments for endometriosis may actually trigger symptoms in those who do not yet have them.
HORMONAL THERAPY
Hormone therapies are used to mimic states in which ovulation does not occur (such as pregnancy or menopause) or to directly block ovulation. Hormonal drugs include oral contraceptives, progestins, GnRH agonists, and danazol. They can be very effective in relieving endometriosis symptoms. Some of these drugs may also be used after surgery to help prevent recurrence of endometriosis. There is also some evidence that GnRH agonists and danazol may improve immune factors associated with endometriosis. But there are downsides:
- None of these drugs can cure the problem. Symptoms recur in about half of patients within 5 years of treatment.
- They do not improve fertility rates and may delay conception in women who use them.
- Side effects of these drugs can be distressing. There is a high dropout rate with the use of nearly all these hormonal treatments.
- Women who take GnRH agonists, danazol, or similar drugs should use non-hormonal birth control methods (such as the diaphragm, cervical cap, or condoms) because these drugs can increase the risk for birth defects.
SURGERY
Surgery is an option for the following women:
- Women with severe pain that does not respond to watchful waiting and medical treatment.
- Women who want to become pregnant and endometriosis is most likely the major contributor to infertility.
There are two basic surgical approaches for endometriosis:
- Conservative Surgery (Laparoscopy or Laparotomy). Conservative surgery uses laparotomy or laparoscopy to remove the endometriosis implants without removing any normal tissue or reproductive organs. It is a good option for women who wish to become pregnant or who cannot tolerate hormone therapy. Some experts believe that laparoscopy surgery should be the treatment of choice for women with endometriosis. Endometriosis often recurs after conservative surgery, however. Recurrence rates at 2 years range from 2 - 47%. The risk for recurrence or residual pain after any procedure increases with the severity of the condition, particularly if endometriosis has affected areas outside the uterus.
- Radical Surgical Therapy (Hysterectomy). Hysterectomy offers the best option for either a cure or more significant control of the problem. Younger patients can often have only a hysterectomy while leaving one or both of their ovaries intact. If endometriosis has developed outside the uterus then even this procedure is not curative. Removing only the uterus with hysterectomy, in any case, has the same risk for recurrence as conservative surgery.
In choosing between hysterectomy (with or without removal of the ovaries, or oophorectomy) and conservative surgeries, age and the desire for children are important factors. One study reported a greater sense of loss, more residual symptoms, and more pain in younger women (under age 30) who have had hysterectomy than in older women. In one study, 37% of such younger women regretted their decision to have a hysterectomy.
Once careful instruction is given for all the risks and benefits of the different surgical options, the doctor must respect any decision a patient makes to retain as much of her reproductive system as she wants, even if she is past menopause. Both the patient and the doctor should also be clear about the possibility of changing procedures once the operation has begun, depending on what the surgeon may observe. For example, the surgeon may find abnormalities that require more extensive surgery.
Much of the success of any procedure relies on the experience of the surgeon. A woman should always ask for a doctor's track record, or the number of times the doctor has performed the procedure in question. The more, the better. Asking for complication rates may be helpful, but a patient should realize that an experienced surgeon may have a higher number of high-risk patients, and therefore, a higher complication rate than a less experienced surgeon with fewer serious cases.
TREATING INFERTILITY IN PATIENTS WITH ENDOMETRIOSIS
For women with severe endometriosis who want to become pregnant, conservative surgery (typically laparoscopy) is the appropriate approach for restoring fertility. Hormonal therapies that treat endometriosis itself, such as GnRH agonist or progestins, are generally considered not to help fertility.
In any case, ART and hyperstimulation of the ovary using fertility drugs to produce eggs are the standard fertility treatments available to women if surgery fails. ART includes techniques such as in vitro fertilization (IVF) and intracytoplasmic sperm injection (ICSI). Hyperstimulation is the less expensive approach. In a 2003 study, however, ART achieved much greater conception rates in women with endometriosis, particularly those with late-stage disease.
It is not clear whether women with early-stage endometriosis do any better with fertility treatment than simply trying to become pregnant through non-aggressive means. Women with endometriosis who are trying to conceive should discuss all treatment options with a specialist.
Lifestyle Changes
DIETARY FACTORS
Some women report relief by avoiding dairy products and having a diet rich in fiber and low in saturated (animal) fats. Fiber-rich foods (such as fruits and vegetables) along with plenty of fluids (water or juice, not caffeine) are not only healthy but help prevent constipation, which can intensify symptoms. If women choose a diet that limits dairy products, they should be sure to have sufficient calcium from other sources.
Fat compounds called omega-3 fatty acids may have specific anti-inflammatory effects. They are found in certain oily fish (sardines, mackerel) and can be obtained in supplements. Supplements may be labeled either omega-3 fatty acids or EPA-DHA (which are the important compounds). Evening primrose oil and black currant oil, found in health food stores, contain similar fatty acids that may be helpful. However, food sources are the healthier choice.
Drinking alcohol and smoking cigarettes may increase endometriosis risk. It is unclear whether caffeine is a significant risk factor.
CONTRAST SITZ BATHS
A sitz bath is simply sitting in a basin of water. Some people report relief by alternating between sitting 3 minutes in a hot water basin and then 1 minute in a cold water basin. This is repeated three times. The procedure is performed twice a day 3 - 4 days a week, except during menstruation.
A warm bath or application of heated abdominal pad may help relieve painful menstrual cramps.
EXERCISE
Exercise may be very helpful for women with endometriosis. It relieves stress and tension and may reduce hormonal levels that can contribute to endometrial growth.
ALTERNATIVE TREATMENTS
Acupuncture and Acupressure. Some studies have reported relief from pelvic pain after acupuncture or acupressure, a technique that applies small pins or pressure to specific points on the body. Some women report relief with reflexology, a technique that uses manual pressure on acupuncture points on the ears, hands, and feet.
Yoga and Meditative Techniques. Yoga and meditative techniques that promote relaxation may also be helpful for menstrual cramps.
Chiropractic. Some women with primary dysmenorrhea have sought help from chiropractors trained in spinal manipulation. One study compared a high-force spinal manipulation technique with a low-force maneuver used as a placebo technique. Both showed lower scores on tests that measure pain, perhaps indicating that a simple back rub by a sympathetic partner or friend may be helpful.
Herbal and Other So-Called Natural Remedies for Cramp Relief. Researchers have not conducted many rigorous studies on herbal remedies for menstrual and pelvic pain. Small studies have suggested that pycnogenol, a plant extract derived from the bark of the French maritime pine tree, may help reduce endometriosis symptoms. Some patients have reported relief from menstrual cramps with aromatherapy using lavender, sage, and rose oils.
Generally, manufacturers of herbal remedies and dietary supplements do not need FDA approval to sell their products. Just like a drug, herbs and supplements can affect the body's chemistry, and therefore have the potential to produce side effects that may be harmful. There have been a number of reported cases of serious and even lethal side effects from herbal products. Always check with your doctor before using any herbal remedies or dietary supplements.
Medications
The basic approach in hormonal treatments for endometriosis is to block production of female hormones (estrogen and progesterone) or to prevent ovulation. Hormonal drugs are used for pain relief only. None have been proven to improve fertility rates and in some cases may delay conception. Specific hormonal drugs may have different effects for women with endometriosis.
- Inducing Pseudopregnancy. Oral contraceptives that contain estrogen and progestins mimic a pregnant state and block ovulation. (Progestins are natural or synthetic forms of progesterone). Progestins may also be used alone, since they have specific effects that can cause the endometrial tissue itself to atrophy.
- Inducing Pseudomenopause. Gonadotropin-releasing hormone (GnRH) agonists reduce estrogen and progesterone to their lowest levels.
- Inducing On-going Blockage of Ovulation. Danazol, a derivative of male hormones, is a powerful ovulation blocker.
Studies report that around 80% of women achieve pain relief after taking these drugs. To date, comparison studies have found few differences in effectiveness among the major hormonal treatments. Differences occur mostly in their side effects. Women should discuss the effects of particular medications with their doctors to determine the best choice.
ORAL CONTRACEPTIVES
Oral contraceptives (OCs), commonly called "the Pill," contain combinations of an estrogen and a progestin (either a natural progesterone or the synthetic form called progestin). For some patients, OCs may provide better endometriosis pain relief than gonadotropin releasing hormone agonist drugs. OCs may reduce the risk of ovarian cancer by 30 - 50% and of endometrial cancer by 50%, a potentially important benefit in women with endometriosis. Patch contraceptives are available, but they may increase the risk for menstrual cramping.
When used throughout a menstrual cycle, OCs suppress the actions of other reproductive hormones (luteinizing hormone, or LH, and follicle stimulating hormone, or FSH) and prevent ovulation. There are many brands available. The estrogen compound used in most oral contraceptives is estradiol. Many different progestins are used, and there are many brands. None to date have proven to be superior over others. Women should discuss the best options for their individual situations with their doctor.
Standard OCs come in a 28-pill pack that contains 21 active pills and 7 inactive pills. Newer “continuous-dosing” (also called “continuous-use”) oral contraceptives aim to reduce -- or even eliminate -- monthly periods and thereby prevent the pain and discomfort that often accompanies menstruation. These OCs contain a combination of estradiol and the progesterone levonorgestrel but use extending dosing of active pills.
OCs with continuous dosing include:
- Seasonale, contains 81 days of active pills followed by 7 days of inactive pills. Women have on average a period every 3 months.
- Seasonique produces about 4 periods a year. A woman takes 84 days of levonorgestrol-estradiol pills followed by 7 days of pills that contain only low-dose estradiol.
- Lybrel, supplies a daily low dose of levonorgestrel and estradiol with no inactive pills. Because it contains only active pills, which are taken 365 days a year, it completely eliminates monthly menstrual periods. Over 50% of women in clinical trials completely stopped menstrual periods by the end of the first year. Some women, however, had occasional unscheduled bleeding or spotting during the first 3 - 6 months.
Estrogen and progestin each cause different side effects. The most serious side effects are due to the estrogen in the combined pill. Uncommon but more dangerous complications of OCs include high blood pressure and deep-vein blood clots (thrombosis), which may contribute to heart attack or stroke. Studies have been conflicting about whether estrogen in oral contraception increases the chances for breast cancer and, if it does, which women are at risk.
PROGESTINS
Progestins alone may be helpful and are the oldest drugs used for endometriosis. Progestins can prevent ovulation and reduce the risk for endometriosis in the following ways:
- They block luteinizing hormone (LH), one of the reproductive hormones important in ovulation.
- They change the lining of the uterus and eventually cause it to atrophy.
- They may provide pain relief equivalent to the more powerful hormone drugs. Some experts recommend them as the first choice for women with endometriosis who do not want to become pregnant.
Specific Progestins. Progestins are available in pill or injectable form, or as a progestin-releasing intrauterine device (IUD). Medroxyprogesterone (Depo-Provera), which is administered by injection every 3 months, is one of the standard progestins used. A low-dose formulation is called Depo-subQ Provera 104. Oral progestins include norethindrone (Micronor, Aygestin, Norlutate). Norethindrone is also known as norethisterone.
Depo-Provera seems to work equally well in controlling endometriosis pain when compared to the gonadotropin releasing hormone (GnRH) agonist leuprolide (Lupron). While Depo-Provera can cause loss of bone mineral density, a condition associated with osteoporosis, GnRH agonists cause even more bone thinning. Patients who receive medroxyprogesterone injections tend to have fewer hot flashes but more episodes of bleeding and spotting.
Progestin-releasing IUDs can be very helpful for many women with endometriosis, particularly an advanced version called the levonorgestrel-releasing intrauterine system, or LNG-IUS (Mirena). Progestin released by the IUD mainly affects the uterus and cervix and causes fewer widespread side effects than other forms of progestins.
The LNG-IUS has proved effective for heavy bleeding (menorrhagia), and studies indicate that it helps control the symptoms of minimal-to-moderate endometriosis. Studies indicate that the LNG-IUS works as well as gonadotropin releasing hormone agonists in managing endometriosis pain, and causes less loss of estrogen. Some experts think that the LNG-IUS could become the treatment of choice for women with endometriosis pelvic pain who do not wish to become pregnant.
Side Effects of Progestins. Side effects of progestin occur in both the combination oral contraceptives and any contraceptive that uses only progestin, although they may be less or more severe depending on the form and dosage of the contraceptive. Side effects may include:
- Changes in uterine bleeding, such as higher amounts during periods, spotting and bleeding between periods (called break-through bleeding), or absence of periods
- Unexpected flow of breast milk
- Abdominal pain or cramps
- Diarrhea
- Fatigue, unusual tiredness, weakness
- Hot flashes
- Decreased sex drive
- Nausea
- Trouble sleeping
- Acne or skin rash (although low-dose OCs actually improve acne)
- Depression, irritability, or other mood changes
- Swelling in the face, ankles, or feet
- Weight gain
Newer formulations of combination pills that use low-dose estrogen and newer progestins may reduce and even avoid many of these side effects. Progestins used in non-oral contraceptives, such as the LNG-IUS IUD, also may not pose as high a risk for these side effects. If side effects persist or are severe, a woman should always talk to her doctor. Many women do not have these side effects, or if they do, their bodies eventually adjust.
GNRH AGONISTS
Gonadotropin releasing hormone (GnRH) agonists are effective hormone treatments for endometriosis. They are able to block the release of the reproductive hormones LH (luteinizing hormone) and FSH (follicular-stimulating hormone). As a result, the ovaries stop ovulating and no longer produce estrogen. Ovulation and menstruation resume around 4 - 10 weeks after stopping the drug. The specific length of time depends on the type of GnRH agonist used.
Specific GnRH Agonists. GnRH agonists include goserelin (Zoladex), buserelin, a monthly injection of leuprolide (depot Lupron), and a nasal spray, nafarelin (Synarel). Studies have reported that nafarelin shrank all implants and significantly relieved symptoms in 85% of patients, delayed recurrence of endometriosis after surgery, and in comparison with leuprolide, was less expensive, had fewer side effects, and a provided better quality of life.
Side Effects and Complications. Commonly reported side effects (which can be severe in some women) include menopause-like symptoms, including hot flashes, night sweat, changes in the vagina, weight change, and depression. The side effects vary in intensity depending on the GnRH agonist. They may be more intense with leuprolide and persist after the drug has been stopped.
The most important concern is possible osteoporosis from estrogen loss. Women ordinarily should not take GnRH agonists for more than 6 months. Certain approaches may preserve bone strength and still effectively relieve endometriosis symptoms:
- Add-back therapy provides doses of estrogen and progestin that are high enough to maintain bone density, but are too low to offset the beneficial effects of the GnRH agonist. Studies suggest this is safe and effective for protecting bone.
- Intermittent leuprolide uses repeated 6-month courses of GnRH agonists followed by an average of 9 months of symptom control only.
- Taking GnRH agonists in very low doses is an alternate approach, but is still largely untested.
- Adding bone-protective drugs may be helpful. The standard ones are bisphosphonates and include alendronate (Fosamax), risedronate (Actonel), and etidronate (Didronel). Other drugs are being tested in combination with a GnRH agonist to preserve bone. They include the parathyroid hormone teriparatide (Forteo) and selective estrogen-receptor modulators (SERMs), such as raloxifene (Evista).
GnRH treatments used alone do not prevent pregnancy. Furthermore, if a woman becomes pregnant during their use, there is some risk for birth defects. Women who are taking GnRH agonists should use non-hormonal birth control methods, such as the diaphragm, cervical cap, or condoms while on the treatments.
DANAZOL
Danazol (Danocrine) is a synthetic drug that resembles a male hormone (androgen). It suppresses the pathway leading to ovulation. Studies have shown symptomatic improvement in 90% of women, although in one study, only about 58% of women expressed satisfaction with this therapy. A high drop-out rate occurs, most often because of adverse side effects, particularly male characteristics, such as growth of facial hair, acne, weight gain, dandruff and deepening of the voice. Side effects virtually always disappear after stopping the medication.
Danazol may increase the risk for unhealthy cholesterol levels. A few cases of blood clots and strokes have also been reported, as well as rare cases of liver damage. Taking a lower dose may relieve endometrial symptoms and reduce the risk for these side effects. Exercise may also help reduce side effects. As with GnRH drugs, pregnant women or those trying to become pregnant should not take this drug because it may cause birth defects.
ANTIPROGESTINS
Other promising drugs for endometriosis affect both estrogen and progesterone receptors.
Mifepristone. Mifepristone (Mifeprex) may be helpful for treating endometriosis. In one 6-month study, mifepristone improved symptoms and reduced endometrial implants without causing menopausal side effects. Long-term use, however, may cause changes in the uterine tissue and cell proliferation.
PAIN MEDICATION
Nonsteroidal Anti-inflammatory Drugs (NSAIDs). Over-the-counter NSAIDs may be sufficient for about 75% of women with endometrial pain. NSAIDs block prostaglandins (the substances that increase uterine contractions). They are effective painkillers and also have other properties that act against inflammatory factors. Aspirin is the most common NSAID, but there are dozens of others available over the counter or by prescription. Among the most effective NSAIDs for menstrual disorders are ibuprofen (Advil, Motrin, Midol PMS), naproxen (Aleve, Naprosyn, Naprelan, Anaprox), and mefenamic acid (Ponstel). For maximum benefit, they should be taken 7 - 10 days before a period is expected. However, long-term use of NSAIDs can increase the risk forgastrointestinal bleeding and ulcers. One study of women with iron deficiency anemia reported that overuse of NSAIDs for menstrual disorders contributes to anemia.
Acetaminophen. Acetaminophen (Tylenol) reduces levels of female hormones (gonadotropins and estradiol, an estrogen), which may have some beneficial effect on menstrual disorders. A combination of acetaminophen and pamabrom (Women's Tylenol Menstrual Relief) is specifically aimed at treating menstrual pain and bloating. (Pamabrom is a diuretic, a drug used to reduce fluid build-up and bloating.)
Opioids. Drugs containing codeine should not generally be used for endometriosis pain management. They can cause pelvic congestion and constipation, which can worsen symptoms in patients with gastrointestinal distress.
INVESTIGATIONAL DRUGS
GnRH Antagonists. GnRH antagonists include ganirelix (Antagon) and cetrorelix (Cetrotide). These newer drugs differ from GnRH agonists in that they have a direct effect on the pituitary gland. The result is quicker action. They also pose a lower risk for complications and side effects.
Aromatase Inhibitors. Drugs that inhibit aromatase, an enzyme that is a major source of estrogen, are being studied for effects against endometriosis. Aromatase levels may be abnormal in women with endometriosis. A pilot study of letrozole combined with a progestin showed reduction of endometriosis as well as decrease in pelvic pain, suggesting that aromatase inhibitor treatment may warrant more research.
Other investigational drugs for treatment of endometriosis include tumor necrosis factor alpha (TNF-alpha) inhibitors, angiogenesis inhibitors, selective progesterone receptor modulators, and various immune modulators.
Conservative Surgery
The goal of conservative surgery is to aggressively remove as many endometrial implants and cysts as possible without causing surgical scarring and subsequent adhesions that could cause fertility problems. The two conservative procedures used are either laparoscopy or laparotomy.
Improving Fertility. Surgery has been shown to improve infertility rates in women with severe endometriosis (stages III and IV). Whether it offers any advantage in pregnancy rates in women with mild-to-moderate endometriosis (stage I or II) is unclear. Nevertheless, some doctors recommend conservative surgery even in early-stage endometriosis. Because of the progressive nature of the disorder, some evidence suggests it improves fertility. Fertility can often be restored even if the surgery does not remove all the endometrial implants. However, the best fertility rates in such cases occur in the early postoperative period. They decline over time if implants have not been completely eliminated. Subsequent surgeries become less effective in restoring fertility.
Reducing Pain and its Recurrence. Studies report pain reduction after surgery in more than 60% of women. Conservative surgery, however, can miss microscopic implants that may continue to cause pain and other symptoms after the procedure.
Even with very successful surgery, endometriosis usually recurs within a period of between 2 months and several years. In one study, the risk for recurrence after conservative surgery was highest in women who have had previous surgery or who have stage IV disease (large endometriotic cysts). Other factors including age, pregnancy, or the number of cysts, did not seem to influence the degree of risk. An earlier study indicated that women who became pregnant after surgery for endometriosis had a lower risk for recurrence, but pregnancy itself does not cure endometriosis. The use of GnRH agonists after surgery may delay recurrence without affecting fertility.
LAPAROSCOPY VS. LAPAROTOMY
Both laparoscopy and laparotomy are effective, but there are differences. Some experts believe that laparoscopy surgery should be the treatment of choice for women with endometriosis.
Laparoscopy is currently the gold standard treatment for endometriosis. It is usually done under general anesthetic and involves the following:
- Carbon dioxide gas is injected into the abdomen, distending it and pushing the bowel away so that the doctor has a wider view.
- The procedure requires making small incisions at the navel and above the pubic bone.
- The laparoscope (a hollow tube equipped with camera lenses and a fiber optic light source) is inserted through the incision at the navel (the umbilical incision).
- A probe is then inserted through the second incision, allowing the doctor to directly view the outside surface of the uterus, fallopian tubes, and ovaries.
- One or two additional small incisions can be made on either side of the lower abdomen through these incisions. Surgical instruments or other devices are passed through these accessory incisions to destroy or remove abnormal tissue. Implants can be removed by excision (surgical removal) using a laser or scissors or by destroying the area with lasers or with electricity (or electrocautery).
In one study, laparoscopy achieved pain relief in over 62% of women. A more recent study conducted 3 - 12 months post-surgery in women with severe (stage III/IV) endometriosis suggested 88% of patients were satisfied with the procedure.
In addition, pregnancy rates can range from 20% to over 50% after laparoscopy. (The procedure does not reduce the chances for pregnancy in women who must still undergo assisted reproductive techniques to conceive.) Still, recurrence rates for laparoscopy are no better than those with laparotomy -- the more invasive procedure.
Laparotomy uses a wide abdominal incision and conventional surgical instruments. It is more invasive and requires a longer recovery time. In some severe cases, the doctor may need a wider view of the pelvic area and will perform this procedure. Laparotomy is typically used for infiltrating endometriosis, although the less invasive laparoscopy is showing increasing effectiveness, even for deep implants.
Complications after Surgery. Many patients have temporary but severe discomfort in the shoulders after laparoscopy due to residual carbon dioxide gas that puts pressure on the diaphragm. The incisions, even with laparoscopy, may cause pain afterward, which can usually be treated effectively with mild pain relievers. There are small risks for bleeding, infection, and reaction to anesthesia. Surgery in the pelvic area may also cause scarring, which may cause pain and interfere with fertility.
PRE- AND POSTOPERATIVE DRUG TREATMENT
Preoperative Drug Treatment. Hormonal drugs administered before laparoscopy and laparotomy are being investigated to reduce the size of endometrial cysts and so perhaps to improve outlook. A 2000 study, for example, reported that the GnRH agonist goserelin injected monthly 12 weeks before laparoscopy resulted in much smaller implants and better treatment of the disease than treatment with surgery alone.
Postoperative Drug Treatment. A number of studies have also been conducted to determine if taking hormonal drugs after surgery can provide further pain relief. Results have been mixed, and the benefits, if any, are probably slight.
NERVE DESTRUCTION TECHNIQUES
Some evidence suggests that surgically cutting the pain-conducting nerve fibers leading from the uterus diminishes the pain from dysmenorrhea. Two procedures, uterine nerve ablation and laparoscopic presacral neurectomy, can block such nerves. Small studies have shown benefits from these procedures, but stronger evidence is needed before they can be recommended for women with severe primary dysmenorrhea.
Laparoscopic Uterosacral Nerve Ablation (LUNA). LUNA is a recent approach that uses either laser or cauterization to destroy nerves in a small segment of the ligaments that connect the cervix with the lower back. The ligaments do not appear to provide any structural support. There are few side effects from the procedure. The patient does not lose any sensations associated with sexual activity.
Laparoscopic Presacral Neurectomy (LPSN). LPSN uses laser techniques to sever a web of nerves between the lower spine and tail bone that transmit pain from the uterus. The procedure does not affect fertility. Complications include constipation, diarrhea, and urinary problems. However, many women find that these symptoms eventually improve.
Hysterectomy
Hysterectomy, the surgical removal of the uterus, is the second most frequently performed surgery in premenopausal women (Cesarean sections are first). About 600,000 hysterectomies are performed each year in the U.S., which is among the highest rate of all countries. By age 60, about a third of American women have had this procedure. The highest hysterectomy rates are in women age 40 - 44. Women in the southern and midwestern areas of the United States are more likely to have the operation than those in the northeast and west.
Endometriosis accounts for 18% of these procedures, but the rates vary widely by ethnic group, with the great majority of endometriosis-related hysterectomies performed in Caucasian women.
Hysterectomy does not necessarily cure endometriosis. Up to 40% of patients may have evidence of recurrence after 5 years.
DETERMINING THE EXTENT OF THE HYSTERECTOMY
Once a decision for a hysterectomy has been made, the patient should discuss with her doctor what will be removed. The common choices are:
- Total Hysterectomy (Removal of uterus and cervix). Removing only the uterus with hysterectomy has the same risk for recurrence as conservative surgery.
- Bilateral Salpingo-Oophorectomy (Removal of the fallopian tubes and ovaries). It can be used with either total or supracervical hysterectomy. This is the only potential cure for endometriosis. If endometriosis has developed outside the uterus then even this procedure is not curative.
Total Hysterectomy. In a total hysterectomy the uterus and cervix are removed; this eliminates the risk of uterine and cervical cancer. (Given technical advances and growing surgical experience, a total hysterectomy may eventually be unnecessary except in special circumstances, such as when cancer is present.)
Bilateral Oophorectomy. Bilateral oophorectomy is the removal of both ovaries. (When only one ovary is removed, the procedure is called oophorectomy.) Bilatera salpingo-oophorectomy is the removal of both fallopian tubes plus both ovaries. These procedures may be performed with either total or supracervical hysterectomy. When a woman decides to have her ovaries removed, she should be aware of both the positive and negative consequences.
Oophorectomy significantly reduces the rates of re-operation and endometrial pain recurrence compared to hysterectomy alone. By removing the ovaries, oophorectomy causes estrogen loss and helps to reduce the risk for ovarian cancer and breast cancer. Premenopausal women should realize, however, that oophorectomy causes immediate menopause, which poses a risk for a number of health problems. These problems include osteoporosis, heart disease, skin wrinkling, and reduction in muscle tone. Estrogen replacement can help offset them. Women who have a bilateral oophorectomy and do not receive hormone replacement therapy may experience more severe hot flashes than women who enter menopause naturally.
POSTOPERATIVE CARE
If possible, a patient should ask a family member or friend to help out for the first few days at home. The following are some of the precautions and tips for postoperative care:
- For a day or two after surgery, the patient is given medications to prevent nausea and painkillers to relieve pain at the incision site.
- As soon as the doctor recommends it, usually within a day of the operation, the patient should get up and walk in order to help prevent pneumonia, reduce the risk of blood-clot formation, and to hasten recovery.
- Walking and slow, deep breathing exercises may help to relieve gas pains, which can cause major distress for the first few days.
- Coughing can cause pain, which may be reduced by holding a pillow over a surgical abdominal wound or by crossing the legs after vaginal surgery.
- Patients are advised not to lift heavy objects, not to douche or take baths, and not to climb stairs or drive for several weeks.
- For the first few days after surgery, many women weep frequently and unexpectedly. These mood swings may be due to depression from the loss of reproductive capabilities and from abrupt changes in hormones, particularly if the ovaries have been removed.
The patient should discuss with the doctor when they can start exercise programs that more intense than walking. The abdominal muscles are important for supporting the upper body, and recovering strength may take a long time. Even after the wound has healed, the patient may experience an on-going feeling of overall weakness, which can be demoralizing, particularly in women used to physical health. Some women do not feel completely well for as long as a year; others may recover in only a few weeks.
COMPLICATIONS FOLLOWING THE PROCEDURE
Minor complications after hysterectomy are very common. About half of women develop minor and treatable urinary tract infections. There is usually mild pain and light vaginal bleeding post operation.
More serious complications, such as those described below, are uncommon, but patients should be aware of their symptoms and call the doctor immediately if they occur.
Infection. Infection occurs in 10 - 15% of patients, the risk being higher with abdominal than with vaginal surgery. Risk factors for infection appear to be obesity, a longer than normal operative time, and low socioeconomic status. Patients should be aware of any symptoms and call the doctor immediately if they occur:
- Continuing or increasingly severe pain
- Fever
- Heavy discharge
- Bleeding (antibiotics given at the time of surgery help to reduce this risk)
Blood Clots. There is a slight risk for small blood clots, usually in veins of the legs (thrombophlebitis). A sudden swelling or discoloration in the leg can indicate this condition and require immediate medical attention.
Other Serious Complications. Other serious and even life-threatening complications are rare but can include:
- Pulmonary embolism (blood clots that travel to the lung)
- Surgical injury of the urinary or intestinal tracts
- Abscesses
- Perforation of the bowel
- Fistulas (a passage that bores from an organ to the skin or to another organ)
- Dehiscence (opening of the surgical wound)
Long-Term Complications. Women who have had a total hysterectomy are at higher risk for the following long-term complications:
- Muscle weakness in the pelvic area
- Prolapse (descent) of the bladder, vagina, and rectum if the muscle’s walls are overly weakened; may require further surgery
- Bowel problems may develop if adhesions (extensive scarring) have formed and obstruct the intestines, sometimes requiring additional surgery.
- Shortening of the vagina is a possible complication specific to vaginal hysterectomy. It can cause pain during intercourse.
Such complications are uncommon.
TREATING MENOPAUSAL SYMPTOMS AND PREMATURE MENOPAUSE AFTER HYSTERECTOMY
After hysterectomy, women may have hot flashes, a symptom of menopause, even if they retain their ovaries. However, women who have a hysterectomy are less likely to have hot flashes than women who have a natural menopause. Surgery may have temporarily blocked blood flow to the ovaries, therefore suppressing estrogen release. If both ovaries have been removed in premenopausal women, the procedure causes premature menopause. Other menopausal symptoms include vaginal dryness and irritation, insomnia, and weight gain.
The most important complications occur in women who have had their ovaries removed. This causes estrogen loss, which places women at risk for osteoporosis (loss of bone density) and a possible increase in risks for heart disease and stroke. A number of drugs are available that can help protect both bones and heart.
Women have typically taken hormone replacement therapy (HRT) after surgery if their ovaries have been removed. HRT can help prevent hot flashes. There have been concerns about HRT-related health risks, including the risk for breast cancer. However, several 2006 studies of postmenopausal women who had hysterectomy indicated that estrogen-only HRT does not increase the risk for breast cancer, except if it is taken for many decades. (Two studies showed no increased risk for breast cancer after 7 years and 15 years, respectively. Women who took estrogen-only HRT for more than 20 years after hysterectomy had only a moderately increased risk.) Combination estrogen-progestin HRT does increase breast cancer risk.
In premenopausal women, such preventive measures are not needed if the ovaries are left intact. The ovaries will usually continue to function and secrete hormones even after the uterus is removed, but the lifespan of the ovaries is reduced by an average of 3 - 5 years. In rare cases, complete ovarian failure occurs right after hysterectomy, presumably because the surgery has permanently cut off the blood supply to the ovaries.
PSYCHOLOGIC AND SEXUAL CONCERNS AFTER HYSTERECTOMY
Sexual intercourse may resume 4 - 6 weeks following surgery. The effect of hysterectomy on sexuality is unclear. Studies have reported that up to 25% of women have increased sexual drive. Nevertheless, some women report no change, and other women develop problems related to sexual function. For example, around 10% of women have vaginal dryness, about 2% of women develop pain during sex, and another 2% also appear to lose capacity for orgasm.
Two procedures associated with hysterectomy may affect sexuality directly.
- Although the clitoris can trigger orgasm even if the cervix is removed, some experts believe that uterine contractions stimulated by sexual intercourse also cause a so-called “deep orgasm.” Retaining the cervix may help to retain this sensation. However, a 2006 review found that women who have a total hysterectomy (removal of both uterus and cervix) are no more likely to have sexual difficulties or problems with urinary and bowel function than women who have only their uterus removed.
- Patients who have both ovaries removed may be at higher risk for loss of sexuality. Ovaries produce small amounts of testosterone (the male hormone responsible for sexual drive) even after menopause.
Testosterone Replacement. Testosterone replacement therapy may restore sexuality in women who experience a decline in sexual drive. Occasionally, oral or injection treatments can produce male characteristics such as facial hair and voice change. A slow-release pellet inserted every 6 months under the skin in the hip appears to reduce these side effects. Taking hormones long-term almost always carries some risk, and it is not yet known what danger testosterone replacement may pose in women.
PAP SMEARS
After a total hysterectomy, in which the cervix has been removed, a woman does not need annual Pap smears of the cervix. However, she still should get regular pelvic and breast exams. Also, women with a history of abnormal Pap smears usually require annual screening.
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