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Endometriosis Awareness: Five Things You Should Know
March is National Endometriosis Awareness Month, so it's time to increase your knowledge about a disease that can cause debilitating pain and is estimated to affect 6.3 million women in the United States.
"When the Endometriosis Association was founded in 1980, endometriosis was commonly thought of as a disease of the single, white career woman," says Carol Drury, Education Program Coordinator and Associate Director. "That is certainly not the case! We estimate that more than 89 million girls and women around the world — of all races, single and married, working inside or outside of the home — are currently affected by endo. Endo has been diagnosed in girls as young as 8 — prior to their first menses — and can also be found in women who are post-menopausal."
1. Endometriosis May Be Found in Many Parts of the Body
Endometriosis gets its name from the "endometrium," which is the tissue lining the inside of the uterus. With endometriosis, the tissue grows on other parts of the body, which may include the ovaries, the outer surface of the uterus, the lining of the pelvic cavity, the tissues that hold the uterus in place or the Fallopian tubes. In some cases, endometriosis is found in other places such as the cervix, bladder or rectum, and in rare cases it can be found in such places as the lungs or brain.
2. Endometriosis Can Be Debilitating
Growths of endometriosis are non-cancerous, but endometriosis can cause health problems, including infertility and debilitating pain. Why? Each month, the endometriosis responds to the hormones produced during the menstrual cycle in the same way that the endometrium does — it builds up, breaks down and sheds. While menstrual blood flows from the uterus and out of the body through the vagina, the blood and tissue shed from the endometrial growths have no where to go. As a woman gets older, the endometriosis growths may expand by adding extra tissue and blood, which causes symptoms to worsen.
There is a correlation between the amount of endometriosis and pain; however, even mild endometriosis can cause severe pain if the growths are located on nerve endings.
3. Everyone's Endometriosis Symptoms Are Not the Same
Endometriosis can often go undiagnosed or be misdiagnosed. "Girls and their parents, women, and even doctors do not know that pain with menstrual periods is not normal if it interferes with daily activities," says Drury. "If discomfort during a period pain cannot be alleviated by use of an over-the-counter analgesic and a heating pad, endometriosis should be suspected."
In addition, women's pain may be discounted. "We hear too many stories of women who have been told their pain is 'all in your head,'" Drury says.
Endometriosis symptoms can include:
- Painful menstrual cramps
- Chronic pain in lower back or pelvis
- Pain during or after sex
- Intestinal pain
- Painful bowel movements or painful urination during menstrual periods
- Spotting or bleeding between menstrual periods
- Diarrhea, constipation, bloating, or nausea, especially during menstrual periods
If you have these symptoms, be aware that many of them are similar to other conditions such as fibroids, kidney stones, irritable bowel syndrome and pelvic inflammatory disease. This is one of the reasons endometriosis can be so difficult to diagnose. "The symptoms are frequently confusing, overlap with other diseases, can be subtle, can be intermittent," says George M. Grunert, M.D., a fertility doctor with Fertility Specialists of Houston. "The ‘classic triad’ of symptoms — pain, bleeding and infertility — are present in the minority of patients. Most women with endometriosis have one, but not all of these at the same time."
Your physician may perform a pelvic exam and an ultrasound to find large cysts or scars; however, the only way to definitively diagnose endometriosis is with a laparoscopy, which is a minor surgical procedure that allows the doctor to look inside your abdomen to see endometriosis tissue.
4. The Cause Is Not Certain
There are many theories about what causes endometriosis, ranging from genetic causes to faulty immune system to whether it is a disease of the endocrine system.
Immune system disorders and certain cancers are more common in women with endometriosis, according to recent research. "Research in the mid- to late-1980s demonstrated that almost every immune cell studied in women with endo was malfunctioning in some way," Drury says. "Now we know that women with endo are at high risk for certain autoimmune diseases. The infertility associated with endometriosis may be related to immunological abnormalities."
Research also shows a link between dioxin (a toxic chemical from pesticides and burning waste) exposure and endometriosis. "In 1992, the Endometriosis Association was instrumental in the discovery of the link between exposure to the man-made chemical dioxin and endometriosis," Drurysays. "Laparoscopies of a research colony of rhesus monkeys revealed that 79 percent of the monkeys exposed to dioxin had endometrial growths on their abdominal organs, with a correlation between doses of dioxin and severity of the disease."
While there is no way to prevent getting endometriosis, you can try to lower estrogen levels in your body since it is the hormone involved in thickening the uterus. Some ways to do that include: exercising regularly, lowering your body fat and avoiding large amounts of alcohol and caffeine.
5. There Is No 'Cure' for Endometriosis, but Treatment May Help Symptoms and Fertility
Your endometriosis treatment plan may depend on your age, symptoms and plans for getting pregnant. Often, you may hear that pregnancy, birth control pills or surgery will "cure" endometriosis. There is no cure for endometriosis.
Getting pregnant and hormonal drug treatments — such as birth control pills, progestins, Danazol and GnRH-analogues — suppress symptoms, but do not cure the disease. Symptoms usually recur after the birth of the child or stopping the hormonal treatment. Hormonal treatments may be best for women with milder disease who do not experience as much pain.
Surgery provides the best option for long-term relief of endometriosis, but it does not cure the underlying cause of the disease. Surgery is usually the best choice for women with severe endometriosis and for those who are having fertility problems. "The most common misconceptions are that everyone with endometriosis is infertile and that treatment restores fertility," Dr. Grunert says. "Endometriosis can decrease fertility, but may not prevent pregnancy. Treatment may improve fertility, but does not restore it to the same level as for women without a history of endometriosis."
During the laparoscopy to diagnose endometriosis, the fertility doctor can also treat the disease by removing growths and scar tissue or burning them away without harming the health tissue around it. A more complex surgery is a laparotomy, which involves a much larger cut in the abdomen and allows the doctor to remove growths in the pelvis or abdomen. The surgery of last resort is a hysterectomy, in which the doctor removes the uterus. By removing the ovaries as well as the uterus, the endometriosis is less likely to return; however, the woman will not be able to get pregnant.
"The most important things to keep in mind are early diagnosis and treatment," Dr. Grunert says. "For fertility patients, the first treatment is the most effective — subsequent surgeries and treatments do not improve success and should be discouraged."
There are some new developments in surgery for endometriosis, that may help in the patient with fertility problems. "For patients with documented endometriosis, serial trans-vaginal drainage of ovarian endometriosis cysts may be better than surgical excision," Dr. Grunert says. "This may be associated with less ovarian injury and with greater preservation of ovarian function."