Diagnosis
Although endometriosis is the most commonly diagnosed uterine disorder, it is often misdiagnosed or missed altogether. In a British study of women with proven endometriosis, more than half of them had been told by a physician that nothing was wrong. In another study, half of women with endometriosis reported that they visited a physician five or more times before they were diagnosed.
General Approach to Diagnosing Endometriosis
Endometriosis frequently begins to develop in adolescence, but it is not typically diagnosed until a woman is in her midtwenties or early thirties. There are a number of reasons for this:
- First, the symptoms vary widely, and sometimes do not occur at all. Some women, then, do not know they have endometriosis until they fail to become pregnant and seek help for infertility.
- Also, 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 also have infertility. 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 agents 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 it often resolves on its own. In one study, pelvic pain improved or resolved without treatment in 77% of women over a 15-month period. One the other hand, 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 whose cause is unknown. 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 it actually is a difference disease. (Endometriosis occurs when endometrial tissue grows and functions outside the uterus.) Adenomyosis is a significant cause of severe pelvic pain and menstrual irregularities. Until recently this was only diagnosed after a hysterectomy, but advanced imaging techniques using ultrasound and magnetic resonance imaging scans may be able to detect it.
It typically occurs women who have uterine fibroids and in women between the ages of 40 and 50, and who have had children.
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| Fibroid tumors may not need to be removed if they are not causing pain, bleeding excessively, or growing rapidly. |
There is some evidence that newer IUDs called levonorgestrel-releasing intrauterine systems (LNG-IUS) may be useful in treating them. A procedure called uterine artery embolization may also be helpful.
Other Causes of Pelvic Pain. Many conditions cause pelvic pain that may or may not be related to menstruation (called dysmenorrhea). Some causes of pelvic pain can be serious and should be ruled out.
Conditions other than endometriosis that cause dysmenorrhea include the following:
- Uterine fibroids
- Pelvic inflammatory disease (which is a result of infections in the pelvic area)
- Miscarriage
- Ectopic pregnancy
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Click the icon to see an image of an ectopic pregnancy. |
- 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 the following:
- Severe kidney or urinary tract infections
- Celiac disease
- Appendicitis
- Interstitial cystitis
- Inflammatory bowel disease
- Diverticulitis
- Irritable bowel syndrome
Physical Examination
The physician 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.
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Click the icon to see an image of laparoscopy. |
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 physician 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 physician 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 detecting and staging endometriosis to determine its severity. In some cases, the procedure itself will restore fertility in women with endometriosis.
Transvaginal Hydrolaparoscopy. Transvaginal hydrolaparoscopy is a new and less invasive approach than laparoscopy, since the instruments are inserted through the vagina, not through incisions in the abdomen. It requires only sedation, does not use CO2 to distend the abdomen, and has a much shorter and easier recovery than with standard laparoscopy. When used by a skilled professional, it is as accurate as laparoscopy, but is not yet widely available.
Hysteroscopy. Hysteroscopy is a procedure that may be used to detect the presence of fibroids, polyps, or other causes of bleeding. (It may miss cases of uterine cancer, however, and is not a substitute for more invasive procedures, such as D&C or endometrial biopsy, if cancer is suspected.)
It is done in the office setting and requires no incisions. The procedure uses a long flexible or rigid tube called a hysteroscope, which is inserted into the vagina and through the cervix to reach the uterus. A fiber optic light source and a tiny camera in the tube allow the physician to view the cavity. The uterus is filled with saline or carbon dioxide to inflate the cavity and provide better viewing. This can cause cramping.
Hysteroscopy is non-invasive, but 30% of women report severe pain with the procedure. The use of an anesthetic spray such as lidocaine may be highly effective in preventing pain from this procedure. Other complications include excessive fluid absorption, infection, and uterine perforation. Hysteroscopy is also employed as part of surgical procedures.
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, or 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 in.), but will miss smaller cysts, or small and shallow endometrial implants on the surface of ovaries, or on the peritoneum (lining of the pelvis).
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.
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, which are both elevated in women severe endometriosis. Higher levels of both 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 and uses this information to rank endometriosis by the extent of the disease and so 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 nor even to treatment success rates.
Some experts believe it would be 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 to 6 mm; deep implants are believed to be the best indicator of progression and severe symptoms.
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