Endometriosis is a paradoxical disease. Unless you or someone you know has the disease, you probably have never heard of it, yet it can be found in approximately five million women in the United States alone. (Frackiewcz) Unlike most other ailments, the extent of the disease does not necessarily dictate the amount of pain experienced by the patient. Even the cause of endometriosis is at question in this era of constant medical advances. With all of this ambiguity, it is important that women suffering from endometriosis learn as much as possible about the disease to better prepare for the physical and emotional burdens that are brought on by it.

The disease process occurs when tissue from the lining of the uterus finds its way outside the uterus into the pelvic cavity. This tissue still responds to the hormonal changes that take place in the body to induce the female menstrual cycle. Unlike the uterine lining that can exit the body during menstruation, the cells positioned outside of the uterus have no way to leave the body, resulting in internal bleeding. This bleeding, over time, creates adhesions, erosions, and other scarring that become inflamed. The most common areas of tissue implantation are the fallopian tubes, ovaries, uterine ligaments, and other areas in the pelvic cavity. (Frackiewicz) The symptoms caused by the implanted tissues vary greatly. The most common complaints are chronic pelvic pain that worsens during menstruation and infertility. As many as twenty to forty percent of infertile women are diagnosed with endometriosis. (Frackiewicz) Involvement of the bowel, bladder, and stomach can lead to pain and problems in those areas as well. (Lindley)

Common Symptoms of Endometriosis

Pelvic Pain

Infertility

Painful Intercourse

Abnormal Menstruation

Painful Bowel Movements

Low-Back Pain

The cause of endometriosis is not clearly understood. Several theories have been proposed over the years. The earliest and most credible is known as the Sampson’s theory of retrograde menstruation. It states that instead of all of the sloughed-off uterine lining leaving the body during menstruation, some of it flows backwards through the fallopian tubes and into the pelvic cavity. (Frackiewicz) This would explain how the tissue gets outside of the uterus but does not explain why the tissue continues to be influenced by the body’s hormonal changes. A more recent proposal calls into account the body’s immune system. An immune system that is not functioning properly would allow the wayward tissues to continue to thrive in the environment outside of the uterus. (Frackiewicz) Another theory cites environmental issues as a contributing factor to the disease. Recent research has found a link between dioxin, a chemical that can be found in pesticides and other items and is often released during waste incineration, and the increasing incidences of endometriosis. Researchers are also considering genetics, specifically a deficiency of the protein beta-3, as a major component in the formation of the disease. (Lindley) It is clear that more research is needed before a definite cause is determined.

Diagnosing endometriosis can often be a difficult task. The only true way to confirm the diagnosis is through laparoscopic surgery. (Lindley) This is an operation in which small incisions are made in the abdomen, usually in the belly button and just above the pubic bone. The abdomen is then filled with carbon dioxide gas to extend it to allow the surgeon a clear view of the reproductive organs. Small instruments can then be inserted through the incisions for viewing and cauterizing the endometriosis lesions if necessary. This surgery can be done on an outpatient basis with the patient usually returning home the same day. Aside from the side effects from general anesthesia, abdominal soreness and referred shoulder pain are common. Laparoscopy can determine the extent, severity, and location of the disease. It is also used to remove visible lesions in order to decrease discomfort An endoscopic view of an erosion is pictured to the right. Another tool for diagnosing endometriosis is a blood test called a CA-125. This test has recently shown promise in detecting moderate to severe disease. CA-125 is a protein that is found in the female reproductive organs and is typically elevated in the presence of endometriosis and certain types of cancer. (Lindley)

Treatment of endometriosis varies greatly among patients. There are several options available but none are without their side effects. The first line of defense is usually expectant management. This is the most passive of treatment options, which uses methods such as heat therapy and over the counter medications to control pain. If the expectant method is not enough to control symptoms, the doctor may recommend hormonal treatment. This can take the form of oral contraceptives, which are a combination of estrogen and progesterone. The pills, taken once daily, have been shown to greatly relieve dysmenorrhea. (Frackiewicz) In one study, as high as ninety-four percent of the women experienced significant pain relief. (Nidus) The side effects that can occur with oral contraceptives can be intolerable for some women. They include bloating, abnormal bleeding, nausea, and abdominal cramps, among others. (TAP)

Danazol is another hormonal drug that is used in the treatment of endometriosis. This drug acts on the pituitary and hypothalamus glands to inhibit the release of female hormones. It has been shown to significantly reduce the size of endometriosis implants. (Frackiewicz) Ninety percent of women in one survey claimed to have significantly less pain during treatment. (Nidus) Although the drug has shown promise, the side effects are usually severe including weight gain, hirsutism (unusual hair growth), acne, voice deepening, and depression. (TAP)

A fairly new category of drug therapy is gonadotropin-releasing hormones. The most commonly used GnRH drug is Lupron Depot. This drug, originally used in the treatment of male prostate cancer, is injected into the patient once a month for six-months and suppresses female hormone production to the point that it puts the female body into a menopausal state. Relief from symptoms has been shown to last upwards of five years with a decrease in pain and shrinkage of endometriosis implants. Success rates with Lupron have been as high as ninety-nine percent in some studies. (TAP) Although, the drug is expensive, costing just over five hundred dollars for one injection. Side effects are less severe than with Danazol but can still be disturbing. Hot flashes, depression, night sweats, and headaches are a few of the most common side effects. A more serious effect of GnRH drugs is the decrease in bone density levels during therapy. Levels are believed to return to normal after the six-month treatment is complete. (TAP) Due to this bone density issue, treatment with Lupron Depot is not recommended for longer than six months. (Frackiewicz)

Oral Contraceptives

Bloating

Abnormal Bleeding

Nausea

Abdominal Cramps

Danazol

Weight Gain

Hirsutism

Acne

Voice Deepening

Depression

Lupron Depot

Hot Flashes

Depression

Night Sweats

Headaches

Bone Density Loss

Perhaps even more damaging than the physical effects of endometriosis is the emotional toll that it takes on the sufferer. For years, women complaining with common symptoms of endometriosis were told that it was “all in their head” or that they were exaggerating the amount of pain they were experiencing. It typically takes up to nine years for an actual diagnosis to be obtained. (Guidone) This leads many women to travel from doctor to doctor in an effort to find relief. Some, inevitably, end up in the waiting rooms of psychiatrists. (Guidone) Women who struggle with infertility invariably blame themselves for not being able to conceive a child, which puts strain on relationships. Those suffering from debilitating pain often battle depression and feelings of worthlessness as a result. As more information is learned about the disease, the emotional aspects are also being addressed. Internet web sites, newsgroups, and mailing lists have sprung up in cyberspace. This has given women an outlet for their pain and frustration, knowing that there are others facing the same problems gives many a tremendous sense of relief. There are also organizations available to support those with endometriosis. The most prominent is the Endometriosis Association, which provides support and information. It is also involved in promoting and conducting research. (Endometriosis Association)

With advances in research, treatment options are becoming more tolerable and surgical procedures more precise. In the near future, what is now considered a chronic, progressive disease could one day be controlled by simple means with little or no side effects. Information seems to be the key to understanding how the female body and female emotions work in unison to create health and well being. For sufferers of endometriosis and for health care providers, education is crucial.

Guidone, Heather. “Building the Typical Endometriosis Patient Profile.” Endometriosis Awareness and Information. http://www.hcgresources.com/profile.htm (30 Oct. 2001).Lindley, Brenda.

Netter, M.D., Frank. Atlas of Human Anatomy. Hoechstetter Printing, 1997. P. 346.

Nidus Information Services, Inc. “What Are the Non-Surgical Treatments for Endometriosis?”

TAP Pharmaceuticals. “What You Should Know About Lupron Depot.” Lupron Endometriosis Home Page. (8 May 2001). http://www.endometriosis1.com/html/f_myth.htm (29 Oct. 2001).