Endometriosis

What Is Endometriosis?

Symptoms

Diagnosis

Is excision of endometriosis necessary to treat pain?

Nodules, cul-de-sac disease, endometriomas, & pain

Can extensive endometriosis be adequately treated at laparotomy?

Minimally Invasive Treatment Options

Prognosis

Laparoscopic Excision of Deep Fibrotic Endometriosis of the Cul-de-Sac and Rectum

Prognosis

Some studies suggest that women with endometriosis are more likely to miscarry than other women. And other research has suggested they may also be at a higher risk of ectopic pregnancy, a potentially dangerous condition in which the egg implants in one of the fallopian tubes rather than the uterus. In spite of these discouraging studies, however, statistics show that most women with endometriosis are able to have children.

In rare cases, women with endometriosis may go on to develop a certain kind of ovarian cancer. However, this link has been seen in less than 1 percent of women who have the disease.

Endometriosis is a chronic and often progressive disease that develops when fragments of endometrial tissue become implanted outside the uterine cavity, usually in other areas of the pelvis. To be defined as endometriosis, the implants must contain both endometrial gland cells (which secrete hormones and other fluids) and stroma cells (which build supportive tissue). These cells contain estrogen and progesterone receptors, which are responsible for uterine growth and thickening. Each month, these exiled endometrial implants respond to the monthly cycle, just as they would in the uterus-filling with blood, thickening, breaking down, and bleeding. The products of the process, however, cannot be shed through the vagina during menstruation. Instead, they develop into collections of blood that form cysts, spots, or patches. As the cycle continues these lesions may grow or reseed. They 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 contributing to infertility.

The endometrial lesions vary widely in size, shape, and color. Early implants are usually very small and look like clear pimples. Over the years, they may diminish in size or disappear, but they may also grow, reaching sizes smaller than a pea or larger than a grapefruit. The implants also vary in color; they may be colorless, red, or very dark brown so-called chocolate cysts, which are filled with a thick tarry fluid and usually appear on the ovaries.

Implants usually form in the peritoneum -- the sticky lining that covers all structures in the abdominal cavity. They can occur next to the ovaries, the connective tissue that supports the uterus (called the uterosacral ligaments), in the area between the uterus and rectum (called the cul-de-sac), or on the fallopian tubes. They can also form on the cervix, vagina, and even on the bladder and bowel. Very rarely, they have been reported in areas far from the pelvis, including the lungs and even the arms and thighs. A relatively uncommon form of endometriosis, called adenomyosis, occurs when implants invade the deep muscle layers of the uterus.

What are the symptoms of endometriosis?
Symptoms of endometriosis

Implants usually form in the peritoneum -- the sticky lining that covers all structures in the abdominal cavity. They can occur next to the ovaries, the connective tissue that supports the uterus (called the uterosacral ligaments), in the area between the uterus and rectum (called the cul-de-sac), or on the fallopian tubes. They can also form on the cervix, vagina, and even on the bladder and bowel. Very rarely, they have been reported in areas far from the pelvis, including the lungs and even the arms and thighs. A relatively uncommon form of endometriosis, called adenomyosis, occurs when implants invade the deep muscle layers of the uterus.

Conditions with similar symptoms

Severe Pain and Nausea. Primary dysmenorrhea is a major cause of recurrent pelvic pain in many women; its cause is not known. Women with endometriosis may also have primary dysmenorrhea. The use of an intrauterine device (IUD) or the presence of pelvic inflammatory disease (PID), uterine fibroids, miscarriage, ectopic pregnancy, polyps, or cancer can also cause symptoms of abnormal bleeding and pain. Severe pain in the gastrointestinal (GI) tract may be confused with appendicitis, inflammatory bowel disease, or diverticulitis. Women with GI symptoms that have no recognizable cause are often diagnosed with irritable bowel syndrome.

Heavy Bleeding. Heavy or abnormal bleeding occurs in as many as 25% of all women and can be caused by a number of problems. Spotting or light bleeding between periods is common in girls just starting menstruation and in young adult women during ovulation. Women taking oral contraception, those with late periods, or women approaching menopause may also experience heavy bleeding. In postmenopausal women, abnormal bleeding may be due to hormone replacement therapy, infection, overgrowth of the uterine lining (i.e., polyps or endometrial hyperplasia), or cancer. Often, the reason for abnormal bleeding is unknown. In some cases it may be due to underproduction of the hormone progesterone or increased levels of prostaglandins, the substances that regulate the narrowing and dilating of blood vessels.

How serious is endometriosis?
Long-term outlook

Without treatment, endometriosis gets progressively worse in up to 64% of women. 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 rigid, web-like structures of scar tissue that can attach to nearby organs and cause pain, infertility, and intestinal obstruction.

Pain

The most common problem for women with endometriosis is pain. The pain experienced around menstruation can be so debilitating that up to 25% of women with the condition can be incapacitated for two to six days of each month. In severe cases, regular activities may be curtailed for up to two weeks per month. Sleeping problems have been reported in three quarters of patients, mostly due to pain.

Infertility

Endometriosis accounts for between 35% and 30% of all female infertility cases, and up to 40% of women with endometriosis are infertile. Endometriosis causes infertility in a number of ways. Endometrial cysts or implants in the ovaries or fallopian tubes are particularly likely to cause infertility. Endometrial cysts in the fallopian tubes may block the egg's passage or they may grow in the ovaries and prevent the release of the egg. Sometimes infertility occurs when adhesions form rigid webs of scar tissue between the uterus, ovaries, and fallopian tubes, thereby preventing the transfer of the egg to the tube.

Endometriosis can be associated with infertility even if the condition is mild. Some studies have observed poor egg implantation in women with endometriosis. Researchers have noted that patients with both endometriosis and infertility sometimes have unusually low levels of certain substances that enable the fertilized egg to adhere to the endometrial lining. Oddly, abnormalities in implantation are more often a factor in infertility in women with mild to moderate endometriosis than in those with severe cases. Some experts have reported fewer eggs in women with endometriosis than in women with other fertility problems, although others have not found any difference. One study found that the eggs in women with endometriosis appeared to have more genetic abnormalities than those in women without the disorder.

Researchers are focusing on defects in the immune system that may cause endometriosis, and in turn, can lead to infertility. For example, immune factors that attack the foreign endometriosis may also attack the similar, normal endometrial tissue in the uterus. In severe endometriosis, researchers have observed increased immune system activity in the fluid surrounding the uterus. They suggest that these greater numbers of infection fighters may create a hostile environment for the sperm and also interfere with implantation and development of a fertilized egg. In one laboratory test, slower sperm were noted in fluid taken from women with moderate or severe endometriosis; abnormal sperm motility was not observed in the fluid of women with mild endometriosis. Elevated levels of prostaglandins, substances produced by the immune system that stimulate blood flow and uterine contractions, are also associated with endometriosis and may also contribute to infertility.

Associated Conditions

Women with endometriosis appear to be more susceptible to other conditions including allergies, yeast, and other infections. Of great concern are studies that suggest that women with endometriosis have a higher risk for cancers, particularly for breast and ovarian cancers, non-Hodgkin's lymphomas, and melanoma.

Emotional Effects and Alcoholism

The emotional effect of severe endometriosis can be almost as devastating as the pain. It can effect marriages and work. In one survey conducted by the Endometriosis Association, 84% of patients reported feeling depressed during periods of pain; 75% of them felt irritable, and over half reported feelings of anxiety and anger. About 20% said they felt hopeless. In one study, during the days around menstruation 30% of women with endometriosis increased their alcohol intake compared to 14% of women with other gynecological problems and only 9.5% of women with no gynecological disorders.

Who Gets Endometriosis?

Experts estimate that between 2% and 4% of all premenopausal adult women have endometriosis, and over a third of these women experience noticeable pain. It is very difficult to determine the prevalence among women, because the symptoms range from none at all to very severe pain. Women with no symptoms are unlikely to be diagnosed, because the only certain diagnostic method is an invasive procedure known as laparoscopy.

Women at risk for endometriosis include those who began menstruating after the age of 13 and whose periods at that time were heavier than normal. Menstrual cycles of less than 27 days long with periods that last more than a week appear to be associated with a higher risk of endometriosis. Approximately 40% to 60% of women with endometriosis report symptoms before age 25. Contrary to popular thought, early pregnancy is not protective, although women have relief from symptoms during pregnancy. Some women who become pregnancy after surgery for endometriosis may be protected against relapse. Menopause usually brings an end to mild to moderate endometriosis, although if women with a history of endometriosis take hormone replacement therapy, the condition may be reactivated. Adenomyosis is more likely to occur in women between the ages of 40 and 50 who have had children. This deep form of endometriosis also usually occurs in women who have uterine fibroids.

Women may be at higher risk for endometriosis if they were born with uterine abnormalities that obstruct the normal outflow of blood and cause retrograde menstruation.

A major study is underway to uncover the genetic factors that predispose one to endometriosis. The incidence of endometriosis in women with a mother or sister with the disorder may be seven times greater than average. A family history of endometriosis often puts women at risk for a more severe manifestation of the condition as well. Oddly, women with red hair have an increased risk for endometriosis; experts guess that the gene determining red hair might be located near other genes that make such women susceptible to endometriosis. Endometriosis is more prevalent in women with a family history of asthma and allergies, including food and skin allergies and hay fever. In women with endometriosis, there also appears to be a higher than normal incidence of accompanying autoimmune diseases, such as systemic lupus erythematosus or Hashimoto's thyroiditis, in which the body's immune system attacks its own cells.

Prolonged exposure to certain industrial chemicals and paint solvents may increase the risk. Women taking tamoxifen -- even after menopause -- may develop endometriosis. Women who drink large amounts of beverages with caffeine appear to have an increased risk for endometriosis, possibly because caffeine contributes to increased levels of the estrogen, estrone.

How Is Endometriosis Diagnosed?

Although endometriosis is the most commonly diagnosed uterine disorder, it is often misdiagnosed or missed altogether because its symptoms vary so widely, and sometimes do not occur at all. The doctor and even the patient may not be able to determine whether menstrual pain is severe enough to indicate an abnormality. 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 (see What Are the Symptoms of Endometriosis?, in this report). Some women do not know they have endometriosis until they try to become pregnant. Endometriosis frequently begins to develop in adolescence but is often not diagnosed for over a decade. In one survey, half of women with endometriosis reported that they had to visit a physician five or more times before they were diagnosed. Some experts believe that early diagnosis and treatment in young women without symptoms might prevent some cases of infertility later on, although at this time treatments for endometriosis may actually trigger symptoms in those who do not yet experience them.

Laparoscopy

The physician may be able to feel tender areas during a pelvic examination, but laparoscopy, an invasive surgical procedure, is currently the only definitive method for diagnosing endometriosis. The procedure involves tiny abdominal incisions through which a fiber optic tube, equipped with small camera lenses, is inserted so the physician can view the uterus on a video monitor. Instruments are also passed through a tube so the physician can take samples of uterine tissue for examination. In some cases, a blue dye is flushed through the fallopian tubes; any obstruction will be shown on a video monitor. Small endometrial implants can often be removed at that time, either by excision (surgical removal) using a laser or scissors or by destroying the area with laser- or electro-cautery. Endometrial implants that are very deep or hidden by other structures may be missed even with this technique. Laparoscopy usually requires a general anesthetic, although the patient can generally go home the same day. (For a fuller description of this procedure, see What Are the Surgical Treatments for Endometriosis?, in this report.)

Staging

To help determine the severity of the condition, some researchers have established four categories that rank severity according to number, size, and location of endometrial implants and adhesions. A number of experts do not believe the categories are useful, however, because often they do not relate to the intensity of the symptoms or to the presence of infertility.

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 may be able to detect adenomyosis (endometrial cysts), large cysts, and endometriomas (endometrial implants in uterine muscle), but may miss small cysts and is not useful for diagnosing endometrial implants. Once a diagnosis is made, more sophisticated imaging techniques, such as computed tomography (CT) scanning or magnetic resonance imaging (MRI) may be used to obtain a more accurate image of severe endometriosis, but these techniques are expensive and are not useful in reaching a diagnosis of endometriosis.

Blood Tests for Ca-125

Experts hope that in the near future, blood tests can be developed that will identify endometriosis by measuring high levels of specific chemical substances released by the implants. Some researchers believe that deep invasive endometriosis may be detected by using a combination of a vaginal examination during menstruation and a blood test for CA-125. This substance is elevated in women with ovarian endometriomas (cysts) and deep endometriosis. Higher levels of CA-125 occur in many other diseases, including ovarian cancer, so results using this test alone do not provide enough information for a definitive diagnosis of endometriosis. Some experts believe, however, that it may be an indicator for more invasive tests in women who are infertile and it may be useful for monitoring the effectiveness of treatments in women with severe endometriosis.

What Are the Non-Surgical Treatments for Endometriosis?
Hormone Therapy

Many hormone therapies that reduce or suppress estrogen levels have been found to relieve symptoms of endometriosis, although such treatments do not improve fertility. Such therapies are often prescribed for a period of time after surgery to help prevent recurrence. There is some evidence that some of these drugs, including GnRH agonists and danazol, also improve immune factors associated with endometriosis. None of these treatments are cures. For example, pain returns within about six months after ending treatments with GnRH or danazol. The duration of pain relief may be slightly longer with danazol than with GnRH, but not by much. Side effects can be distressing, and there is a high drop-out rate with the use of nearly all these hormonal treatments. Women who are taking GnRH agonists, danazol, or similar agents 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.

Progestins. Oral contraceptives combining estrogen and progestin are most often used for treating endometriosis. Progestins alone may be helpful. One study reported that progestins provide temporary pain relief equivalent to the more powerful hormone drugs, such as danazol or a GnRH agonist. Some experts recommend them as the first choice for women with endometriosis who do not want to become pregnant. Injections of medroxyprogesterone (Depo-Provera) every three months have been helpful in women with endometriosis and pelvic pain. Women who choose this treatment have an absence of regular periods but often experience unpredictable spotting and other side effects, including cramping, weight gain, headache, depression, and irritability, hair loss. Norethindrone (Aygestin, Norlutate) and dienogest are other progestins under investigation for endometriosis. In one study, for example, 94% of patients achieved some pain relief from norethindrone; only 7% dropped out because of side effects.

GnRH Agonists. At this time, gonadotropin releasing hormone (GnRH) agonists are the most 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. GnRH agonists include a monthly injection of leuprolide (depot Lupron) and a nasal spray, Nafarelin (Synarel). Other GnRH agonists are goserelin (Zoladex) and buserelin. (known as depo-Lupron). Nafarelin is much less expensive than leuprolide, and in one study, shrank all implants and significantly relieved symptoms in 85% of patients. In another study, nafarelin also delayed recurrence of endometriosis after surgery.

Because estrogen loss can lead to osteoporosis, women ordinarily do not take GnRH agonists for more than six months. Additional factors that increase the chance for osteoporosis include smoking, having polycystic ovarian syndrome, alcohol abuse, long-term use of certain drugs (such as corticosteroids) that reduce bone density, and a family history of osteoporosis. Other common side effects include hot flashes, reduced sexual drive, headache, nausea and vomiting, memory loss, changes in the skin and hair, rapid heartbeat, vaginitis, and weight changes. Depression is common, and may be treated with antidepressants. There may be a temporary increase in cholesterol levels. GnRH treatments do not prevent pregnancy; their use during pregnancy also increases the risk for birth defects. Women who are taking GnRH agonists or other non-contraceptive hormones, such as danazol (see below), should use non-hormonal birth control methods, such as diaphragm, cervical cap, and condoms while on the treatments. The risks and benefits of long-term therapy are not fully known. Small studies of women who used leuprolide for up to three years have not reported any permanent pituitary damage that could affect fertility. Studies suggest that GnRH agonists taken in very low doses may be effective against endometriosis while still producing some estrogen so that bone density is not lost. Researchers are also investigating the use of add-back therapy, which provides doses of estrogen and progestin that physicians hope are high enough to reduce bone loss, but too low to offset the beneficial effects of the GnRH agonist. At this time, add-back regimens that have allowed prolonged GnRH use include the progestin, norethindrone, alone or in combination with conjugated estrogens (Premarin) as well as norethindrone in combination with a bisphosphonate (alendronate or etidronate).

Danazol. Danazol (Danocrine) is a synthetic substance that resembles a male hormone. It suppresses estrogen and menstruation and is used to reduce symptoms of endometriosis, sometimes in combination with an oral contraceptive. Studies have shown symptomatic improvement in 90% of women, but in one study, only about 58% of women expressed satisfaction with this therapy, and other studies indicate a high drop-out rate because of adverse side effects. In can cause male characteristics, such as growth of facial hair and deepening of the voice. Exercise may help reduce the male-related side effects. Other side effects include weight gain, acne, and dandruff. Danazol may increase the risk for unhealthy cholesterol levels. A few cases of blood clots and strokes have been reported. Pregnant women or those trying to become pregnant should not take this drug, because it may cause birth defects.

Antiprogestins. Antiprogestins are promising agents for endometriosis. The most well-known is RU486, or mifepristone, also unfortunately referred to as the "abortion pill" because its antiprogestin effects induce miscarriage. Others being studied are lilopristone and onapristone. In one study, mifepristone improved symptoms and reduced endometrial implants without causing menopausal side effects during the six months of the trial.

Investigative Hormones. Other promising synthetic hormonal drugs for reducing endometriosis include gestrinone and cyproterone acetate. Gestrinone is an anti-estrogen hormone that in some studies have reduced pain comparable to GnRH agonists with fewer menopausal symptoms. In one study, bone density even increased slightly. One potentially serious adverse effect of gestrinone, however, is the development of unhealthy cholesterol levels. A small study suggested that cyproterone acetate, a male contraceptive drug, could drastically reduce endometriosis; more research is needed. An estrogen-like drug, raloxifene, was under investigation for endometriosis, but does not appear to offer any benefits.

Nonsteroidal Anti-Inflammatory Drugs (NSAIDs)

In cases of heavy bleeding, nonsteroidal anti-inflammatory drugs (NSAIDs) may be tried. Aspirin is the most common NSAID, but there are dozens of others, including ibuprofen (Advil, Motrin, Rufen) and naproxen (Aleve, Anaprox, Naprosyn), both of which are often recommended for menstrual pain. Such drugs reduce inflammation, in part by their action against prostaglandins -- the substances that increase uterine contractions, thereby causing cramping and pain.

Alternative Treatments

Some women have reported relief from pelvic pain after acupuncture, Yoga and other exercises, and meditative techniques that promote relaxation. Ginger tea may help in relieving nausea. In a study of one patient, an oriental herb, keishi-bukuyogan, relieved symptoms without reducing estrogen levels. It is certainly possible that some herbal medicines may be helpful, but patients should always be wary of unproven claims for quick cures. Until scientific studies determine actual benefits, proper doses, and side effects of nonregulated herbal products, the patient is at risk for ineffective or even harmful treatments. It is dangerous to assume that simply because a substance is "natural", it has no side effects and is completely safe. High doses of any herbal or so-called natural medicine are not necessarily safer than traditional drugs, and because of the lack of manufacturing standards and knowledge about toxicity or interactions with other drugs, they may be even more dangerous. There is absolutely no evidence that endometriosis is caused by candida (commonly called yeast infection) or allergies, so dietary remedies and allergy shots are probably not useful.

What Are the Surgical Treatments and Other Procedures for Endometriosis?
Conservative Surgery

General Guidelines. Conservative surgery removes the endometriosis without removing any other reproductive organs and is a good option for women who wish to become pregnant or who cannot tolerate hormone therapy. 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. 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 five years. Some physicians recommend surgery as soon as endometriosis is diagnosed, even if it is mild, because of the progressive nature of the disorder. Although there is no solid agreement about whether surgery improves fertility in women with mild to moderate endometriosis, one study found that 31% of women who had laparoscopic surgery became pregnant compared to 18% who were not surgically treated. If endometriosis is found on the ovaries and fallopian tubes, it is particularly important that the first surgical attempt remove all the implants; subsequent surgeries become less effective in restoring fertility. The use of GnRH agonists after surgery may delay recurrence of endometriosis after laparoscopy.

Procedures:

Laparoscopy or Laparotomy.
Laparoscopy is now the standard conservative surgical treatment for endometriosis and has largely replaced laparotomy, which uses a wide abdominal incision and conventional surgical instruments. In some severe cases, the physician may need a wider view of the pelvic area and will perform a laparotomy, which is more invasive and requires a longer recovery time. Pregnancy rates can range from 20% to over 50% after laparoscopy. One study further indicated that many women who become pregnant after surgery for endometriosis are protected against recurrence (pregnancy itself does not cure endometriosis). In addition to improving fertility, in one 1997 study, 90% of surgical patients experienced symptom relief for at least a year after laparoscopy.

It is important to stress that 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 -- that is, the number of times he or she 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.

Laparoscopy is usually done under a general anesthetic and requires small incisions at the navel and above the pubic bone. Carbon dioxide gas is injected into the abdomen, distending it and pushing the bowel away. The laparoscope, a hollow tube equipped with camera lenses and a fiber optic light source, is inserted through the umbilical incision. A probe is then inserted through the second incision allowing the physician to directly view the outside surface of the uterus, fallopian tubes, and ovaries. Surgical instruments or other devices are passed through the tubes to destroy or remove abnormal tissue. After laparoscopy the wound itself is minimally painful. There are small risks of bleeding, infection, and reaction to anesthesia. Many patients experience temporary but severe discomfort in the shoulders after the operation due to residual carbon dioxide gas that puts pressure on the diaphragm.

One recent technique called microlaparoscopy uses even smaller instruments than traditional laparoscopy and does not require general anesthesia; when the surgeon is experienced, the patient has less discomfort and recovers more quickly after this procedure. Many of these techniques, particularly microlaparoscopy, are experimental in many centers and not widely available.

Destroying the Endometrial Implants.
The physician may destroy endometrial implants or adhesions by various methods. Excision (removal of implants by cutting) using small surgical instruments is useful for deep, inaccessible implants. More accessible implants or adhesions can be vaporized, cauterized, or coagulated using electrical or laser devices. An ovary affected by endometriosis may be treated by surgically removing the cysts or draining the cysts and destroying the lining using electro- or laser surgery. Studies differ over whether one procedure is significantly better than the other in restoring fertility and relieving pain. A decision should be based on the individual condition and the experience of the surgeon. In severe cases, the ovary may have to be removed.

Presacral Neurectomy
For patients who have persistent pain in the middle of the pelvic area, a procedure called presacral neurectomy may be beneficial. This operation requires a wide abdominal incision; the surgeon then uses either electricity or lasers to destroy tissue in the pelvic region that contain pain-causing nerves. Studies indicate that, regardless of the severity of the case, pain is reduced by more than half in 50% to 84% of patients and the benefit persisted for more than a year. In one study, major complications occurred in 0.6% of cases. Constipation is a very common side effect, but it is easily relieved with medication.

Hysterectomy
Indications for Hysterectomy. As many as one-third of all American women eventually have a hysterectomy by the time they are 65 years old; this is twice the rate in English women and four times the rate in French women. Nearly 600,000 hysterectomies are performed each year. Endometriosis is the second most common reason after uterine fibroids for having a hysterectomy. One study found, however, that only 58% of hysterectomies were necessary; 25% were uncertain; and 16% were not appropriate. Hysterectomies are often recommended for women with extensive endometriosis not controlled by conservative surgery or drug therapies. Even with one or more of these conditions, a woman in her reproductive years may wish to delay undergoing this drastic surgery for as long as safely possible. It is important to note that studies have shown that endometriosis recurs in 13% of women after three years following a hysterectomy and in 40% after five years. The risk for recurrence increases with the severity of the condition, particularly if endometriosis has affected the intestinal tract and if ovaries are not removed. Even after a patient decides to have a hysterectomy, she should be sure that her surgeon is experienced in all techniques that apply to her specific condition. If she is at all uncertain or believes she has not been given sufficient information, she should not feel embarrassed to seek a second opinion. Even the best surgeons and physicians do not always have all the answers to questions concerning hysterectomies. Making the best decision possible before surgery will help to reduce the emotional repercussions afterward.

Total vs. Supracervical Hysterectomy. Once a decision for a hysterectomy has been made, the patient should discuss with her physician what will be removed. The common choices are total hysterectomy, supracervical hysterectomy, or either procedure with bilateral salpingo-oophorectomy (removal of tubes and ovaries). In a total hysterectomy the uterus and cervix are removed, which eliminates the risk of uterine and cervical cancer. In a supracervical hysterectomy the uterine body is removed and the cervix is retained. Retaining the cervix helps support the pelvic floor and may help maintain full sexual sensation. The risk for cervical cancer remains. Given technical advances and growing surgical experience, a total hysterectomy may eventually be unnecessary except in special circumstances, such as when cancer is present. If a bilateral salpingo-oophorectomy is also performed, the fallopian tubes and ovaries are removed. Oophorectomy prevents ovarian cancer and lowers the risk for breast cancer, which are both concerns in women with endometriosis. Ovarian cancer is very difficult to detect in its early stages and spreads rapidly. Losing ovarian function, however, imposes other risks that are higher than cancer: bone loss, heart disease, and possibly Alzheimer's disease. In addition, women sometimes experience a decrease in sexual function after oophorectomy because ovaries also continue to produce small amounts of testosterone (the male hormone responsible for sexual drive) even after menopause. Oophorectomy, then, in older women could still interfere with the important health, sexual, and emotional benefits of this male hormone.

The physician should respect any decision the patient makes to retain as much of her reproductive system as she wants -- even if she is past menopause -- assuming she has been carefully instructed in all the risks and benefits of the different options. Both the patient and the physician 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.

Abdominal vs. Vaginal Hysterectomy. An abdominal hysterectomy was the standard operation in the past, but is usually used only now for those with large fibroids, when the ovaries need to be removed, or when cancer or pelvic disease is present. It requires a wide incision to open the abdominal area, from which the surgeon removes the uterus. If possible, the incision should cut horizontally across the top of the pubic hairline (the bikini incision). This incision heals faster than a vertical incision, which is used in complicated cases. The patient may need to remain for three to four days in the hospital and recuperation at home takes about four to six weeks.

A vaginal hysterectomy, now the standard approach, uses only a vaginal incision through which the uterus is removed. In some cases, a procedure called laparoscopic-assisted vaginal hysterectomy (LAVH) may be used for a uterus with small fibroids, particularly if the uterus is somewhat prolapsed and can be pulled down easily. In LAVH, the surgeon makes several small abdominal incisions, through which the attachments to the uterus and ovaries are severed. The uterus and ovaries can then be removed through the vaginal incision, as in the standard approach. There does not appear to be much benefit for most patients in the use of LAVH over a standard vaginal hysterectomy.

Except in women who have had cesarean sections, the complication rates from vaginal hysterectomy are reported to be between half to a quarter of those from standard abdominal hysterectomy. Even in women with cesarean sections, one recent study observed no difference in complication rates or even slightly fewer with vaginal hysterectomy. Many surgeons still prefer abdominal hysterectomy to vaginal hysterectomy, however, because they can view the whole area and uncover any accompanying problems that might not be detected with the less invasive procedure.

Complications During and Right after Hysterectomy and Postoperative Care.
Minor complications after hysterectomy are very common. About half of women develop urinary tract infections, which are usually minor and treatable. Between 10% and 15% develop infections in the wound, with the risk being higher with abdominal than with vaginal surgery. Antibiotics given at the time of surgery help to reduce this risk. Other risk factors for infection appear to be obesity, a longer than normal operative time, and low socioeconomic status. In the past, about 10% of women required transfusions, in some cases because of hemorrhage, and in other cases because anemia was detected before the operation. More recently, the rate of transfusions has declined. Physicians are more reluctant to transfuse because of the associated risks of hepatitis and AIDS, particularly since more women can tolerate moderate blood loss without developing adverse symptoms or reactions. Other potentially serious complications of hysterectomy include pneumonia and formation of small blood clots, usually in veins of the legs (thrombophlebitis). Serious and even life-threatening complications are rare, but include pulmonary embolism (blood clots that travel to the lung), abscesses, perforation of the bowel, fistulas (a passage that bores from an organ to the skin or to another organ), or dehiscence (the opening of the surgical wound). Other rare but serious complications include intestinal obstruction, prolapsed vagina (in which the walls of the vagina are weakened and fall), and loss of urinary control from severed nerves during total hysterectomies.

Postoperative Care in the First Few Days after Hysterectomy.
For a day or two after surgery, the patient is given medications to prevent nausea and pain killers to relieve pain at the incision site. 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. As soon as the physician 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. If possible, a patient should ask a family member or friend to help out for the first few days at home. Patients are advised not to lift heavy objects (including small children), 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 not only to depression about the loss of reproductive structures, but to abrupt changes in hormones, particularly if ovaries have been removed. There is usually light vaginal bleeding. Mild pain often continues, but if it becomes severe, if fever occurs, or there is heavy discharge an infection may have developed. A sudden swelling or discoloration in the leg can indicate thrombophlebitis (a blood clot). In such cases, or if any sudden unexpected symptoms occur, a physician should be called immediately.

Long-Term Complications and Care after Hysterectomy
Fatigue and Weakness. 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. Light exercise, such as walking, should be started as soon as possible. The patient should discuss with the physician when more intense exercise programs can be initiated.

Problems in the Bladder and Lower Intestinal Tract.
Women who have had a total hysterectomy are at higher risk for developing muscle weakness in the pelvic area. Prolapse (descent) of the bladder, vagina, and rectum may occur, possibly requiring further surgery. Bowel problems may develop if adhesions (extensive scarring) have formed, sometimes requiring additional surgery. A possible complication specific to vaginal hysterectomy is shortening of the vagina, which can cause pain during intercourse.

Menopausal Symptoms and Premature Menopause.
Women may have hot flashes after surgery even if they retain their ovaries, since 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. The symptoms come on abruptly and may be more intense than those of natural menopause. Symptoms include hot flashes, vaginal dryness and irritation, and insomnia. Women should take hormone replacement therapy (HRT) after surgery if their ovaries have been removed. In premenopausal women, HRT is not needed if the ovaries are left intact. The ovaries will usually continue to function and secrete hormones, even after the uterus is removed. Their life span, however, is reduced by an average of three to five years. In rare cases, complete ovarian failure occurs right after hysterectomy presumably because the surgery has permanently cut off the ovaries' blood supply.

Pap Smears.
Annual Pap smears are recommended for all women with a cervix who have reached the age of 18 or over or who have become sexually active. After a total hysterectomy, in which the cervix has been removed, a woman still needs Pap smears of the vagina, although because of the low risk of vaginal cancer, the Pap smears usually do not have to be performed annually. The interval depends on the patient's risk factors as determined by the physician. Women with a history of abnormal Pap smears usually require annual screening. Women with a supracervical hysterectomy, in which the cervix remains, still need annual Pap smears. Annual pelvic and breast examinations are important for all women, including those with a total hysterectomy.

Psychologic and Sexual Concerns.
Sexual intercourse may resume after four to six weeks, but between 25% and 46% of women experience loss of or reduced sexuality. In one study, however, 25% of women experienced increased sexual drive after a hysterectomy. Some women who had been afraid of getting pregnant are able to feel more spontaneous afterward. A woman's emotional response to a hysterectomy certainly plays a role. Not enough is yet known about the mechanisms of sexual response in women to accurately predict the physical effects of a hysterectomy. Many experts now believe that uterine contractions stimulated by sexual intercourse cause a so-called deep orgasm. Retaining the cervix may help to retain this sensation. If the cervix is removed, the clitoris located outside the vagina can trigger an orgasm, although some women report distress at the loss of the intense deeper sensation. If the ovaries are removed or their blood supply is cut off, even if the woman is taking estrogen replacement therapy, male hormones (androgens) are no longer produced; such hormones appear to be important in the sexual drive of both men and women and may also protect against heart disease. Some women try androgen replacement therapy to restore sexuality. Occasionally oral or injection treatments can produce male characteristics such as facial hair and voice change. A slow-release pellet inserted every six months under the skin in the hip appears to reduce these side effects. Taking hormones long term almost always carries some risks, and it is not yet known what danger testosterone replacement may pose in women. Support groups and counseling can provide important help for this problem.

Ablation and Resection Techniques for Adenomyosis.
Endometrial ablation or resection, in which various techniques are used to destroy the lining of the uterus, is standard treatment for severe menstrual bleeding and for some cases of fibroids. It may also be useful for adenomyosis, if the implants have not penetrated too deeply into the uterine wall.

Surgical Procedures for Intestinal or Urinary Tract Endometriosis
Hysterectomies are often not successful in preventing recurrence if endometriosis has spread to the intestines or urinary tract. If deep endometriosis causes severe symptoms, surgical excision of these implants may be necessary. Sometimes the surgeon will need to remove adhesions that have joined pelvic structures, such as the vagina and rectum. If a surgeon is experienced, laparoscopy may be used to remove urinary tract or bowel obstructions caused by endometriosis or adhesions, but conventional laparotomy is often required for complete surgical removal of endometriosis in the intestine or urinary tract. Almost any intestinal surgery is major and requires careful preoperative preparation to avoid infection. The operations take a long time, are technically difficult, and pose a risk for bleeding and infection. The recovery period is often lengthy.

What Are the Fertility Treatments for Women with Endometriosis?

Pregnancy becomes increasingly difficult to achieve as women age, particularly if endometriosis is present. Those who wish to become pregnant are encouraged to try to do so as early in their reproductive life as possible. Most of the nonsurgical treatments to relieve symptoms of endometriosis do not improve fertility rates in women who wish to become pregnant. Within six months to a year after laparoscopy, however, between 20% and over 50% of women who are trying to conceive become pregnant, even those with severe endometriosis. Pregnancy itself is not a cure for endometriosis, but studies indicate that pregnancy after surgery may reduce the risk for repeat surgeries. If women do not conceive after laparoscopy, a repeat procedure or fertility treatments should be considered -- particularly in older women. The drug menotropin, or hMG (Pergonal), contains high concentrations of FSH and LH and may be effective in stimulating fertility in women with endometriosis. Because of the high costs and possible risks of hMG therapy, it is usually prescribed after other, simpler therapies have failed. Assisted reproductive technology (ART) refers to the procedures that retrieve the eggs from the ovary and reimplant them after fertilization. Such procedures include in vitro fertilization (IVF) and gamete intrafallopian transfer (GIFT).