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Endometriosis is a common and often frustrating gynecologic condition that can cause a number of disturbing symptoms. Although the true incidence is unknown, many experts believe that between 3% and 10% of women have this condition. The term endometriosis (say "in-doe-meet-ree-oh-sis") was coined in 1927 by Dr. John Sampson, who theorized that this condition is caused by menstrual blood "backflowing" through the fallopian tubes and into the abdominal cavity. For example, just as sperm can travel through the uterus and out the tubes, so can tiny particles of blood from a menstrual period. These particles "implant" on the organs around the fallopian tubes, including the uterus, ovaries, ureters (the tubes coming from the kidney to the bladder), top of the vagina (called the cul-de-sac), and perhaps intestines. Although there are other theories to explain endometriosis that occurs in areas of the body far away from the female organs, Sampson's theory is the best explanation thus far of how endometriosis occurs. As the implants grow and respond to hormonal stimulation, they can cause symptoms. Interestingly, endometriosis has been diagnosed in unusual locations like the knees, thumbs, thigh, vulva, lungs and liver, and has even been diagnosed in men receiving estrogen therapy.

Endometriosis is a sometimes bizarre disorder. Some women have dozens of implants but never have symptoms, while others may have a few visible implants but have severe pain. We're not sure why this condition is so variable, or why only a few lesions can cause such severe pain. Endometriosis can cause pelvic pain. Many women with endometriosis report severe pain with intercourse or exercising, or pain with bowel movements. The pain may be dull and throbbing, or sharp and stabbing, or even a combination of both. Since pain is so individual, each woman with this condition may report different types of pain, depending on the location of endometriosis and the type of activity she undertakes. Some women report severe pain and cramps with periods, which may be a result of endometriosis. Unfortunately, sometimes the pain is difficult to "pin down" and since there are no blood tests, x-rays, or ultrasounds that are diagnostic of endometriosis, some women are told that the pain is psychological in nature. While this type of pain does exist, it is much less common than pain from an actual disease, such as endometriosis, and medical students are currently learning that they should leave no stone unturned before even thinking about suggesting a psychological source of the pain. Not all women with endometriosis have pain. In fact, gynecologists sometimes do surgery for other reasons, such as fibroid tumors or ovarian cysts, and find a lot of endometriosis. When questioned, many of these women tell us they have never had pain or other symptoms. This is another example of how unusual this condition is.

The first step in diagnosing endometriosis is getting a thorough checkup by a gynecologist or other doctor experienced in treating women's health issues. The doctor will ask a number of questions about your symptoms, including pain, pain with intercourse, and any bowel or bladder problems you may have. You may be asked about plans for children and your activities throughout the day. Try to be as specific as possible when answering the questions. If it hurts every time you do aerobics, or reach for a glass, or have sex in a certain position, tell your doctor so as much information as possible can be used to help you. Doctors are used to discussing personal issues and there is certainly no need to be embarrassed. Next, you will undergo a thorough physical exam, including a pelvic (internal) exam, and, most likely, a rectal exam. The doctor will feel your ovaries, uterus, and the ligaments between your rectum and vagina. If necessary, an ultrasound of your female organs will be performed. However, this test is not always useful, and your doctor may not need it. Because other conditions can cause pelvic pain, your doctor may obtain a swab of the cervix for bacterial infections such as chlamydia and gonorrhea, or you may receive a prescription for antibiotics "just in case" an infection is the source of pain. If you have had prior surgery, such as an appendectomy, c/section, laparoscopy, or uterine surgery, scar tissue around the pelvic organs, called "adhesions," may have formed, which can cause pelvic pain. The decision to look inside your abdominal cavity, via laparoscopy, or to attempt treatment without a firm diagnosis, is a decision you and your doctor must make together.

Treatment of endometriosis is best undertaken when a firm diagnosis is made. The only way to be certain of the diagnosis is to look inside during surgery. Some patients require a "bikini cut" or even a larger incision, but most cases of endometriosis can be diagnosed with outpatient surgery called laparoscopy. Laparoscopy involves placing a tube into the belly button with a light on one end and a camera on the other. Gas is used to "blow up" the abdominal cavity, and the light is used to look closely at the female organs, intestines, appendix, liver, and kidney tubes (ureters). Endometriosis can be removed by tiny scissors, by burning, or by laser. All of these methods are effective, and it is doubtful that one is much better than the other. Some "purists" believe that cutting the endometriosis out is the safest, as it theoretically lessons the chance for scar tissue formation. However, this is largely unproved. If the endometriosis involves the bowel or the kidney tubes, your doctor may elect to leave it behind, as doing surgery in these areas may endanger these organs. However, sometimes it is possible (and desirable) to remove the endometriosis implants from these areas. This may involve extensive bowel surgery with a lengthy stay in the hospital. It is doubtful your doctor would undertake such advanced surgery without first discussing this with you.

Laparoscopy is not absolutely necessary before attempting treatment. Some patients refuse surgery, and sometimes the symptoms are not severe enough to the patient to require surgery. In these cases "medical" treatment with medications may help significantly. Since endometriosis is usually a chronic disease, long-term treatment is often necessary. Medical treatments can also begin after laparoscopy, in order to help prevent recurrence of the disease. The type of treatment varies greatly from patient to patient, so this will require a lot of interaction between you and your doctor. The type of treatment will also depend on whether or not you desire to become pregnant soon, so please discuss this aspect of treatment with your doctor. Medical treatments include non-steroidal anti-inflammatory medications like ibuprofen and naproxen for pain relief, birth control pills, which help decrease the size of endometriosis implants, progesterone pills or shots, a "male" hormone called danazol (which has lost favor due to hair grown and development of other masculine effects), certain anti-depressant medications that block pain from pelvic organs, and a powerful "anti-hormone" class of medications called GnRH agonists. A class of anti-depressant medications called SSRI medications seem to block pain impulses from the female (pelvic) organs, and many women find them helpful for relief of chronic pelvic pain. Your doctor may discuss these with you, but please realize that this is not an attempt to say the pain is "in your head," since these medications act in a specific fashion on pain nerves. GnRH agonists are administered as shots, implants under the skin, or as a nasal spray, and treat endometriosis by decreasing the estrogen and progesterone in the body. Endometriosis is responsive to hormones, and shrinks when the levels of estrogen and progesterone decrease. Unfortunately, although the medication is often very helpful, it cannot be given long-term (most doctors use it for 6-12 months) because it may decrease bone density. In addition, it can have many powerful side-effects, including hot flushes, joint pain, headaches, and fatigue. This medication is usually considered the "top of the line" medical therapy for endometriosis, but since it has many possible side-effects, you should discuss this type of treatment in detail with your doctor.

Surgery other than laparoscopy is sometimes necessary to treat endometriosis. Doctors have received a lot of negative publicity about the number of hysterectomies performed in the U.S. If you are diagnosed with endometriosis, it is likely your doctor will sooner or later mention hysterectomy as a treatment option. In fact, to do otherwise would be unethical, since a "complete" hysterectomy with removal of the uterus and both ovaries is the most effective treatment for endometriosis. Please keep in mind, though, that many women with this disease never need a hysterectomy, and that in unusual cases the disease can come back even after a complete hysterectomy. Put another way, women with endometriosis who desire children, or who decline hysterectomy, often have many treatment options other than hysterectomy. Having a hysterectomy is a very personal decision that should not be taken lightly. Some women with this disease finally "give in" after trying all other forms of treatment, and have excellent results with hysterectomy. Others choose not to have this surgery, and have excellent results with medications.

A number of television shows have suggested that women with endometriosis are destined to remain infertile. This is completely untrue. This condition is associated with infertility, but many women with endometriosis have children. If there is a lot of damage to the fallopian tubes, assisted reproduction (i.e. in-vitro fertilization) may be necessary.

However, since researchers have recently discovered that treating even "mild" amounts of endometriosis can increase fertility, perhaps medical or laparoscopic treatment will increase fertility in many women with endometriosis.

In summary, endometriosis is a vexing disease that frustrates many women, their partners, and their doctors. It can severely impact one's life, and can cause significant physical and psychological pain. It can damage one's relationships and career, and can make it difficult to become pregnant. Effective treatment is possible, but in some cases requires a truly heroic effort from the patient, her family, and her doctor. Finding a doctor who will listen, take your concerns seriously, and have the commitment to consider your case on an individual level makes all the difference in the world. Educating your partner and family about this chronic condition is also critical, as you will need their support. Many women are effectively treated with one course of medication or one laparoscopic surgery, and never develop symptoms again, while others require years of therapy and multiple surgeries. It is an unfair disease that often strikes at a time in life when a woman is in a relationship or is considering children. There are many sources of support, and with education, research, and dedicated family and health care providers, this disease may be effectively treated.

D. Ashley Hill, M.D.

Associate Director

Department of Obstetrics and Gynecology

Florida Hospital Family Practice Residency

Orlando, Florida