Endometriosis Association Education Support Research What is Endometriosis? Endometriosis is a puzzling disease affecting women in their reproductive years. The name comes from the word "endometrium," which is the tissue that lines the inside of the uterus and builds up and sheds each month in the menstrual cycle. In endometriosis, tissue like the endometrium is found outside the uterus, in other areas of the body. In these locations outside the uterus, the endometrial tissue develops into what are called "nodules," "tumors," "lesions," "implants," or "growths." These growths can cause pain, infertility, and other problems. The most common locations of endometrial growths are in the abdomen-involving the ovaries, fallopian tubes, the ligaments supporting the uterus, the area between the vagina and the rectum, the outer surface of the uterus, and the lining of the pelvic cavity. Sometimes the growths are also found in abdominal surgery scars, on the intestines or in the rectum, on the bladder, vagina, cervix, and vulva (external genitals). Endometrial growths have also been found outside the abdomen, in the lung, arm, thigh, and other locations, but these are uncommon. Endometrial growths are generally not malignant or cancerous, they are a type of normal type of tissue outside the normal location. However, in recent decades there has been an increased frequency of malignancy occurring or being recognized in conjunction with endometriosis. Like the lining of the uterus, endometrial growths usually respond to the hormones of the menstrual cycle. They build up tissue each month, break down, and cause bleeding. However, unlike the lining of the uterus, endometrial tissue outside the uterus has no way of leaving the body. The result is internal bleeding, degeneration of the blood and tissue shed from the growths, inflammation of the surrounding areas, and formation of scar tissue. Other complications, depending on the location of the growths, can be rupture of growths (which can spread endometriosis to new areas), the formation of adhesions, intestinal bleeding or obstruction (if the growths are in or near the intestines), interference with bladder function (if the growths are on or in the bladder), and other problems. Symptoms seem to worsen with time, though cycles of remission and reoccurrence are the pattern in some cases. Symptoms The most common symptoms of endometriosis are pain before and during periods (usually worse than "normal" menstrual cramps), during or after sexual activity, infertility, and heavy or irregular bleeding. Other symptoms may include fatigue; painful bowel movements with periods; lower back pain with periods; diarrhea and/or constipation and other intestinal upset with some periods. Some women with endometriosis have no symptoms. Infertility affects about 30-40% of women with endometriosis and is a common result with progression of the disease. The amount of pain is not necessarily related to the extent or size of growths. Tiny growths (called"petechial") have been found to be more active in producing prostaglandins, which may explain the significant symptoms that often seem to occur with small implants. Prostaglandins are substances produced throughout the body, involved in numerous functions, and thought to cause many of the symptoms of endometriosis. Theories About the Cause of Endometriosis The cause of endometriosis is not known. A number of theories have been advanced but no one of them seems to account for all cases. One theory is the retrograde menstruation or transtubal migration theory that during menstruation some of the menstrual tissue backs up through the fallopian tubes, implants in the abdomen, and grows. Some experts on endometriosis believe all women experience some menstrual tissue backup and that an immune system problem and/or hormonal problem allows this tissue to take root and grow in women who develop endometriosis. Another theory suggests that the endometrial tissue is distributed from the uterus to other parts of the body through the Lymph system or the blood system. A genetic theory suggests that it may be carried in the genes of certain families or that certain families may have predisposing factors to endometriosis. Another theory suggests that remnants of tissue from when the woman was an embryo may later develop into endometriosis or that some adult tissues retain the ability they had in the embryo stage to transform into reproductive tissue under certain circumstances. Surgical transplantation has also been cited as a cause in cases where endometriosis is found in abdominal surgery scars, although it has also been found in such scars when direct accidental implantation seems unlikely. Other theories are being developed by the Association and others researching endometriosis. Diagnosis Diagnosis of endometriosis is generally considered uncertain until proven by laparoscopy. Laparoscopy is a minor surgical procedure done under anesthesia in which the patient's abdomen is distended with carbon dioxide gas to make the organs easier to see and a laparoscope (a tube with a light in it) is inserted into a tiny incision in the abdomen. By moving the laparoscope around the abdomen, the surgeon can check the condition of the abdominal organs and see the endometrial implants, if care and thoroughness are used. A doctor can often feel the endometrial implants upon palpation (pelvic examination by the doctor's hands), and symptoms will often indicate endometriosis, but medical textbooks indicate it is not good practice to treat this disease without confirmation of the diagnosis. Ovarian cancer sometimes has the same symptoms as endometriosis, and hormonal treatment (particularly estrogen), which is common in treating endometriosis, could cause a cancer to grow even faster. A laparoscopy also indicates the locations, extent, and size of the growths and may help the doctor and patient make better informed, long-range decisions about treatment and pregnancy. Treatment Treatment for endometriosis has varied over the years but no sure cure has yet been found. Hysterectomy and removal of the ovaries has been considered a "definitive" cure, but Association research has found such a high rate of continuation/recurrence that women need to be aware of steps they can take to protect themselves. (Space does not allow us to detail these steps here - please see additional Association literature.) Painkillers are usually prescribed for the pain of endometriosis. Treatment with hormones aims to stop ovulation for as long as possible and can sometimes force endometriosis into remission during the time of treatment and sometimes for months or years afterwards. Hormonal treatments include estrogen and progesterone, progesterone alone, a testosterone derivative (danazol), and a new drug, GnRH, gonadotropin releasing hormone. Side effects are a problem for some women with all hormonal treatments. Because pregnancy often causes a temporary remission of symptoms and because it is believed that infertility is more likely the longer the disease is present, women with endometriosis are often advised not to postpone pregnancy. However, there are numerous problems with the "Prescription" of pregnancy to treat endometriosis. The woman might not yet have made a decision about childbearing, certainly one of the most important decisions in life - she might not have critical elements in place to allow for childbearing (partner, financial meants, etc.) or she may already be infertile.. Other factors may also make the pregnancy decision and experience harder. Women with endometriosis have higher rates of ectopic pregnancy and miscarriage and one study has found they have more difficult pregnancies and labors. Research also shows there are family links in endometriosis, increasing the risk of endometriosis and related health problems in the children of women with the disease. Conservative surgery, either major or through the laparoscope, involving removal or destruction of the growths, is also done and can relieve symptoms and allow pregnancy to occur in some cases. As with other treatments, however, recurrences are common. Surgery through the laparoscope (called operative laparoscopy) is rapidly replacing major abdominal surgery in the U.S. and will probably also do so in other countries. In operative laparoscopy, surgery is carried out through the laparoscope using laser, cautery, or small surgical instruments. Radical surgery, involving hysterectomy and removal of all growths and the ovaries (to prevent further hormonal stimulation) becomes necessary in cases of long-standing, troublesome endometriosis. Menopause also generally ends the activity of mild or moderate endometriosis. Even after radical surgery or menopause, however, a severe case of endometriosis can be reactivated by estrogen replacement therapy or continued hormone production after menopause. Some authorities suggest no replacement hormone be given for a short period (3-9 months) after hysterectomy and removal of the ovaries for endometriosis. Learning About Endometriosis Endometriosis is without question one of the most puzzling conditions that affect women. More is being learned about it as time goes on and this knowledge is dispelling some of the assumptions of the past which now have been disproven or are suspect. One of these past assumptions was that nonwhite women did not generally get endometriosis. This has now been shown to be untrue. In the past, many nonwhite women often were not receiving the medical care necessary to diagnose endometriosis. Another "myth" about endometriosis was that very young women did not get it - an idea that probably arose because formerly teenagers and younger women endured menstrual pain (often one of the early symptoms) in silence and did not get pelvic exams until the disease progressed to unbearable proportions. It was also believed in the past that endometriosis more often affected well-educated women. Now we know that this notion developed because well-educated women were those getting the best medical care and were more often persistent enough to obtain explanations for their symptoms. Another assumption that has at times been made about endometriosis is that it is not a serious disease because it is not a killer like cancer, for instance. However, anyone who has talked with many women with endometriosis about their actual experiences with the condition soon learns that while some women's lives are relatively unaffected by it, especially in the early stages, too many others have suffered severe pain, emotional stress, have been unable to work or carry on normal activities at times, and have experienced financial and relationship problems because of the disease. Perhaps someday soon we will understand this perplexing disease and be able to end all the myths, pain, and frustrations that sometimes go with it! How the Endometriosis Association Can Help The Endometriosis Association is a self-help organization of women with endometriosis and others interested in exchanging information about endometriosis, offering mutual support and help to those affected by endometriosis, educating the public and medical community about the disease, and promoting research related to endometriosis. Ending the feeling of being alone, sharing with others who understand what one is going through, counteracting the lack of information and misinformation about endometriosis, and learning from each other are ways those affected by the disease help each other. The Association is an international organization with headquarters in Milwaukee, Wisconsin (USA)- members in numerous countries, and chapters and activities concentrated in North America though developing on other continents also. Elected officers guide the Association, with help and suggestions from an advisory board of medical professionals and others. The Association was founded in Milwaukee in 1980 by Mary Lou Ballweg and Carolyn Ketch and was the first group in the world dedicated to helping women with endometriosis. Meetings are held according to the wishes of the local chapter. Usually some are planned to allow informal information-sharing about endometriosis and support and help with problems arising from it. Other meetings offer speakers and presentations on endometriosis,self-helpcare, infertility, medical research, and so on. Literature on endometriosis and related concerns is published regularly. A small library of materials on endometriosis is maintained. And a data registry of individuals' experiences with endometriosis is maintained for research. The data registry is compiled of the detailed answers to a questionnaire about an individual's endometriosis history, treatments and results, and experiences with the disease. Members and subscribers receive a newsletter six times a year, and formal and informal Crisis Call listening/counseling services are available to members who are willing to listen and offer suggestions and help during times of pain, difficult decisions, or other crises due to endometriosis. The Association also conducts research on endometriosis and serves as a clearinghouse for information on endometriosis. Researchers interested in working with the Association data registry (housed at the Medical College of Wisconsin) should write the Research Review Panel, Endometriosis Association, at the headquarters office. Donations to help continue work of the Endometriosis Association are very much needed and appreciated. HOW YOU CAN GET MORE INFORMATION Join the Association As a member, a wide variety of informative, accurate, and highly-acclaimed literature on endometriosis and related health problems, developed by the Association, is available to you. Our popular book entitled OVERCOMING ENDOMETRIOSIS: NEW HELP FROM THE ENDOMETRIOSIS ASSOCIATION can be ordered from the Association for $9.95 U.S./$12.50 Canada. The book was described by the eminent Dr. Robert W. Kistner, Professor Emeritus, Harvard Medical School, as the most updated and comprehensive book on endometriosis that I have ever read. l recommend it highly to women of all ages." The Association also has available educational videotapes, cassette tapes of speeches by leading experts on the disease, booklets, kits, and newsletters. For a free information packet including our "Materials To Help You" catalog, call or write to us. If you are not diagnosed with endometriosis but wonder if you might have it, you can order our "How Can I Tell If I Have Endometriosis?" Kit. Send $ 3.75 U .S./$4.75 C for the kit. or order the Endometriosis Sourcebook to learn more. To become a member, fill out the membership form inside and mail it with your dues to: International Headquarters Endometriosis Association 8585 N. 76th Place Milwaukee, Wisconsin 53223 1-800-992-3636 (US, Puerto Rico, & the Virgin Islands, and the Bahamas) 1-800-426-2END (Canada) JOIN US TODAY! YOU'LL BE GLAD YOU DID. Copyright 1992 Endometriosis Association, Inc.Issued 1980. Revised 1982, 83, 86, 87, 89, 91, 92 Return to the IVF Homepage This page, and all contents, are Copyright © 2005 by IVF.com, Atlanta, GA, USA.