Living with Endometriosis

Endometriosis is a chronic disease of a woman's or teenage girl's reproductive and immune systems found in 2-4% of the general female population worldwide. It affects more women than breast cancer. Unfortunately, it is often overlooked as a cause of the pain and other symptoms a woman is experiencing. In fact, the average delay from the beginning of symptoms to diagnosis is over nine years. Age at diagnosis ranges from the midteens to the forties.

Nurses may encounter endometriosis suffers in any clinical setting. Most commonly, those working in ambulatory care clinics, school health, occupational health, and physician offices, will often see women and teenage girls presenting with many symptoms associated with endometriosis.

The exact cause remains unknown. The most common symptom associated with this disease is pelvic pain, experienced by at least 90% of sufferers. Pain can occur during the menstrual period, at ovulation, and other times. The degree of pain can range from mild to severe and is often an indication of where the endometrial lesions are growing.

Not every woman has all the symptoms of endometriosis; some experience more than others. Specific symptoms are:

• pelvic pain, menstrual pain, pain with sex, pain with bowel movements;
• fatigue, low energy, exhaustion;
• heavy or irregular menstrual bleeding;
• bowel complications--constipation, diarrhea, changes in bowel habits,
• rectal bleeding, painful bowel movements;
• bladder complications--urinary frequency, painful urination, urinary
• retention, blood in urine during periods;
• fertility problems;
• dizziness, migraine headaches, nausea, low back pain, extensive
• allergies, vaginal discharge, yeast infections, low-grade fever.

Endometriosis is often confused with pelvic inflammatory disease, bladder infections, irritable bowel syndrome, and a multitude of other conditions. Because it was once believed that white women were at higher risk than women of other races, nonwhite women are often misdiagnosed with another condition when the true problem is endometriosis.

Experts currently believe that when a woman or teenage girl has endometriosis, uneliminated menstrual debris stays active and may travel to other sites. Tissue like the endometrium found outside of the uterus then develops into nodules that can cause pain, infertility, and other significant problems. The tissue implants behave the way that endometrial tissue in the uterus normally does--responding to monthly hormonal changes, becoming engorged with blood. At the end of the menstrual cycle, the lesions bleed, produce their own estrogen, and build up month after month.

It is well known that menstrual pain and cramping is caused by an imbalance of prostaglandins. Women who have endometriosis tend to produce more prostaglandins than women who do not have this disease. Researchers believe that this prostaglandin imbalance may cause many of the symptoms.

Endometrial growths are most often found in the abdominal cavity on the uterus, ovaries, cervix, or vagina; between the vagina and the rectum; in the rectum; on the bladder, small and large intestines, kidneys, or sides and walls of the pelvis; on ligaments supporting the uterus; on the vulva or in abdominal surgery scars. The most common site is behind the uterus in the cul-de-sac. Lesions have also been found outside the abdomen in the thigh, arm, lung, diaphragm, and brain.

Treatment for endometriosis focuses on managing physical symptoms, undergoing medical or surgical treatment, paying attention to physical health, modifying lifestyle habits, and coping with factors that trigger stress. Every woman's symptoms and severity of the disease are unique, so treatment regimens should be individualized.

Nurses skilled in history taking, listening, nutrition planning, and understanding the emotional effects of chronic pain can assist women in setting goals to manage endometriosis. Nurses can emphasize the importance of keeping a diary showing the presence, length, severity, and duration of pain; following a healthy diet that may reduce certain symptoms; identifying life stressors that aggravate endometriosis; exercising to reduce the effects of stress; implementing lifestyle changes; and exploring alternative approaches to managing symptoms.

Endometriosis is a chronic disease with no cure. However, women or teenagers who are well- informed and take an active role in their treatment can and do live very successfully with this disease. Informed nurses will direct women and young girls who present with specific symptoms to seek appropriate medical diagnosis and intervention. They will offer information on support groups and appropriate resources, such as the Endometriosis Research Center (1-800-239-7280; www.endocenter.org) and the Endometriosis Association (1-800-992-3636; www.EndometriosisAssn.org).

Glenda J. Motta, RN, MPH is co-author of Coping with Endometriosis (Avery Penguin Putnam; 2000) and Successful Living with Endometriosis Action Workbook (Balance Enterprises; 2000; (516) 822-3183 or email: BalanceEnt@aol.com). With these books she hopes to empower women to take charge and live well, despite endometriosis. She has successfully lived with endometriosis for almost 40 years and is a nationally acclaimed speaker, ET nurse, and healthcare reimbursement expert.