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Coping With Endometriosis

June 10, 2008 - 7:30am
 
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Coping With Endometriosis

Many women suffer from cramps associated with menstruation, but chronic symptoms at other times during the menstrual cycle should not go unattended. You may have endometriosis. This is a disease in which the endometrial tissue—the cellular lining normally found inside the uterus—grows outside of the uterus in other areas of the body.

Endometriosis is an often undiagnosed condition, because many health practitioners don't differentiate between common menstrual pain and the more serious complaints associated with this condition. Furthermore, some women with endometriosis don’t have pain. Others think of endometriosis as the "career woman's disease," and are inclined to diagnose it primarily in white professional women. Yet, over five million women in the United States, and millions more worldwide, suffer from the debilitating symptoms of endometriosis during their reproductive years. Recent research indicates that the condition affects women regardless of age, ethnic background, or socioeconomic status, and some studies estimate that 10% to 15% of all menstruating women have some evidence of endometriosis.

Getting Medical Attention

Angela Dupre first complained of abdominal pain when she was a sophomore in high school. Her gynecologist ruled out endometriosis because she was "too young." Instead, the doctor did an ultrasound and ran a battery of tests on her upper and lower gastrointestinal tracts. When the tests turned up nothing, she prescribed birth control pills for Angela, hoping this would regulate her cycle.

Fortunately for Angela, her mother refused to accept the doctor's dismissal that it was "all in her head." She sought additional medical help from a general practitioner who agreed that Angela might have endometriosis. A correct diagnosis, however, needs to be confirmed with a laparoscopy. It is a minor surgical procedure done under anesthesia that uses fiber optics to view tissues in the body.

Backed by the diagnosis of the general practitioner, Angela and her mother returned to the gynecologist with a request for the procedure. The laparoscopy did indicate that Angela had Stage 1 endometriosis. The doctor was able to use new laser techniques to vaporize the abnormal tissue.

What is Endometriosis

The tissue that lines the inside of the uterus is known as the endometrium. During the normal course of a menstrual cycle this lining builds up. If conception and implantation has not occurred, the lining is then shed as menstrual flow. In the case of endometriosis, tissue that looks and behaves like the endometrium is found outside the uterus where it develops into lesions and growths. The most common locations are:

  • The abdomen
  • The fallopian tubes and ligaments that support the uterus
  • The ovaries
  • The area between the vagina and the rectum
  • The lining of the pelvic cavity
  • The outer surface of the uterus

Endometrial growths can also occur in:

  • The vagina
  • The vulva
  • The bladder
  • The cervix
  • The bowel
  • Abdominal surgical scars

Less common sites are:

  • Lungs
  • Arms
  • Thighs

This misplaced tissue responds to the hormonal changes of the menstrual cycle in the same way as the endometrial lining of the uterus: each month the tissue builds up, and then is broken down and sloughed off. Yet, unlike the menstrual blood that flows out of the uterus and body through the vagina, the blood and tissue from the endometrial growths have no outlet. This can result in breakdown of the tissue from the lesions, as well as internal bleeding and inflammation—the source of the excruciating pain felt by so many women.

The cause of endometriosis is unknown, but medical researchers have speculated about a number of possibilities. One theory suggests that during menstruation some of the endometrial tissue backs up through the fallopian tubes and into the abdomen where it implants and grows. Another theory suggests that endometrial tissue may be distributed from the uterus to other parts of the body through the blood system or lymph system. Still other experts attribute the disease to problems in the immune system or hormonal system, or point to genetic factors that may also affect the growth of endometrial tissue in some women. Research by the Endometriosis Association has found a link between dioxin (TCCD) exposure and the development of endometriosis. There is also a strong suggestion that it may be genetic in at least some cases.

The Symptoms

The most common symptom of endometriosis is excessive pain during the menstrual period that is experienced in the abdomen or lower back, or pain after sexual activity. The amount of pain is not always indicative of the severity of the disease. Some women have severe endometriosis yet experience little pain, while others with more mild cases are completely incapacitated. Other symptoms include fatigue, painful urination during periods, painful bowel movements during periods, and other gastrointestinal upsets. Infertility issues affect approximately 30% to 40% of women with endometriosis.

It takes a number of years for endometriosis to develop and most women do not experience symptoms until years after their menstrual periods begin. Symptoms can increase as the areas of endometriosis grow. With the onset of menopause, however, the abnormal growths shrink and the symptoms subside.

Endometriosis is often diagnosed in stages:

  • Mild—characterized by the existence of small areas of endometrial implants that are not widespread
  • Moderate—describes the condition of larger implants with more extensive scar tissue
  • Severe—diagnosed when there are large implants and extensive scar tissue

Treatment for Endometriosis

Endometriosis can be definitively diagnosed with laparoscopy, but there is no cure for the disease. Depending on your goals, the various treatment options available should be discussed with your doctor.

Medication:

The pain can be controlled with over-the-counter pain relievers (eg, Tylenol) and nonsteroidal anti-inflammatory drugs (eg, ibuprofen). In the case of more severe pain, prescription drugs are often used.

Hormonal treatments aim to stop ovulation and hence the entire menstrual cycle that produces the endometrial lining. Oral contraceptives, danazol (a testosterone derivative), progestins (such as Norlutate), gonadotropin releasing hormone agonist drugs (such as Lupron or Zoladex), and aromatase inhibitors (eg, Femara) are often tried.

Surgery:

Surgery is used to remove growths, relieve pain, and in the case of infertility, may allow pregnancy to occur. A laparoscopy involves 2-3 tiny abdominal incisions through which an operating scope and other nutrients are passed in order to allow the surgeon to cauterize (burn) the growth, cut scar tissue, and possibly free tissues that have become stuck together as a result of the endometriosis. These procedures may be done with electricity, laser energy, or small scalpels.

Laparotomy involves a larger abdominal incision, which most commonly is at the bikini line and shaped like an upward curve or a "smile". This surgery is considered more extensive and requires a longer recovery time. It may be recommended in cases where there is more severe endometriosis and scarring.

At one time it was thought that pregnancy kept the disease at bay, hence the misconception that endometriosis was more prevalent in career women who postponed having children until their careers were underway. But pregnancy is not considered a "cure" for endometriosis, however the hormonal changes associated with pregnancy do tend to minimize the symptoms and progression of endometriosis.

In severe cases where childbearing is no longer an issue, consideration may be given to removing the uterus, tubes, and ovaries, which is known as a complete hysterectomy with bilateral salpingo oophorectomy. This procedure may not be able to completely remove all endometriotic implants, particularly if they involve other abdominal organs such as the intestines, but in most cases it will remove most of the involved tissues and minimize further pain.

Endometriosis is a puzzling condition that can affect every area of your life. Simple approaches such as exercising and eating nutritiously can greatly reduce discomfort from the disease. While many women experience similar symptoms, each case of endometriosis is very different. If you suffer from this very painful condition, check the following resources and consult with a healthcare provider who will help you manage your care most effectively for your individual situation.

RESOURCES

American College of Obstetrics and Gynecology
http://www.acog.org/

Endometriosis Research Center
http://www.endocenter.org/

CANADIAN RESOURCES:

The Society of Obstetricians and Gynaecologists of Canada
http://sogc.medical.org/

Women's Health Matters
http://www.womenshealthmatters.ca/index.cfm

References

Endometriosis Research Center. Available at: http://www.endocenter.org/.



Last reviewed March 2008 by Ganson Purcell Jr., MD, FACOG, FACPE

Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.

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