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What Is It?
Endometriosis is a condition in which tissue similar to your uterine lining grows outside your uterus and gets stuck to other organs or structures, often resulting in pain or infertility.
Endometriosis is a noncancerous condition in which tissue similar to the Endometriosis is a condition in which tissue similar to your uterine lining grows outside your uterus and gets stuck to other organs or structures, often resulting in pain or infertility.(uterine lining) grows outside your uterus and adheres to other structures, most commonly in the pelvis, such as on the ovaries, bowel, fallopian tubes or bladder. Rarely it implants in other places, such as the liver, lungs, diaphragm and surgical sites.
It is a common cause of pelvic pain and infertility. It affects about 5 million women in the United States.
Historically thought of as a disease that affects adult women, endometriosis is increasingly being diagnosed in adolescents, as well.
When endometriosis tissue grows outside of the uterus, it continues to respond to hormonal signals—specifically estrogen—from the ovaries telling it to grow. Estrogen is the hormone that causes your uterine lining to thicken each month. When estrogen levels drop, the lining is expelled from the uterus, resulting in menstrual flow (you get your period). But unlike the tissue lining the uterus, which leaves your body during menstruation, endometriosis tissue is essentially trapped.
With no place to go, the tissue bleeds internally. Your body reacts to the internal bleeding with inflammation, a process that can lead to the formation of scar tissue, also called adhesions. This inflammation and the resulting scar tissue may cause pain and other symptoms.
Recent research also finds that this misplaced endometrial tissue may develop its own blood supply to help it proliferate and nerve supply to communicate with the brain, one reason for the condition's severe pain and the other chronic pain conditions so many women with endometriosis suffer from.
The type and intensity of symptoms range from completely disabling to mild. Sometimes, there aren't any symptoms at all, particularly in women with so-called "unexplained infertility."
If your endometriosis results in scarring of the reproductive organs, it may affect your ability to get pregnant. In fact, 30 to 40 percent of women with endometriosis are infertile. Even mild endometriosis can result in infertility.
Researchers don't know what causes endometriosis, but many theories exist. One suggests that retrograde menstruation—or "reverse menstruation"—may be the main cause. In this condition, menstrual blood doesn't flow out of the cervix (the opening of the uterus to the vagina), but, instead, is pushed backward out of the uterus through the fallopian tubes into the pelvic cavity.
But because most women experience some amount of retrograde menstruation without developing endometriosis, researchers believe something else may contribute to its development.
For example, endometriosis could be an immune system problem or local hormonal imbalance that enables the endometrial tissue to take root and grow after it is pushed out of the uterus.
Other researchers believe that in some women, certain abdominal cells mistakenly turn into endometrial cells. These same cells are the ones responsible for the growth of a woman's reproductive organs in the embryonic stage. It's believed that something in the woman's genetic makeup or something she's exposed to in the environment in later life changes those cells so they turn into endometrial tissue outside the uterus. There's also some thinking that damage to cells that line the pelvis from a previous infection can lead to endometriosis.
Some studies show that environmental factors may play a role in the development of endometriosis. Toxins in the environment such as dioxin seem to affect reproductive hormones and immune system responses, but this theory has not been proven and is controversial in the medical community.
Other researchers believe the endometrium itself is abnormal, which allows the tissue to break away and attach elsewhere in the body.
Endometriosis may have a genetic link, with studies finding an increase in risk if your mother or sister had the disorder. No specific genetic mutation has been clearly linked with the disease.
The most common symptoms are painful menstrual periods and/or chronic pelvic pain.
Others include:
It is important to understand that other conditions aside from endometriosis can cause any or all of these symptoms and other causes may need to be ruled out. These include, but are not limited to, interstitial cystitis, irritable bowel syndrome, inflammatory bowel disease, pelvic adhesions (scar tissue), ovarian masses, uterine abnormalities, fibromyalgia, malabsorption syndromes and, very rarely, malignancies.
Gynecologists and reproductive endocrinologists, gynecologists who specialize in infertility and hormonal conditions, have the most experience in evaluating and treating endometriosis.
The condition can be very difficult to diagnose, however, because symptoms vary so widely and may be caused by other conditions.
Among the ways doctors diagnose the disease are:
Laparoscopy. Currently, laparoscopy is the gold standard for the diagnosis of endometriosis and is commonly used for both diagnosis and treatment. Performed under general anesthesia, the surgeon inserts a miniature telescope called a laparoscope through a small incision in the navel to view the location, size and extent of abnormalities (such as adhesions) in the pelvic region.
However, merely looking through the laparoscope can't diagnose deep endometriosis disease, in which the endometrial tissue is hidden inside adhesions or underneath the lining of the abdominal cavity. More extensive dissection is needed to diagnose and treat this type of disease.
Many women have a combination of both deep and superficial (in which the endometrial tissue can be easily seen) endometrial disease.
Peritoneal tissue biopsy. During the laparoscopy, the doctor may remove a tiny piece of peritoneal tissue (the inner layer of the lining of the abdominal cavity) or other suspicious areas to help establish the diagnosis of endometriosis. This is recommended by the American College of Obstetricians and Gynecologists (ACOG), which notes that only an experienced surgeon familiar with the appearance of endometriosis should rely on visual inspection alone to make the diagnosis. A biopsy, however, is not mandatory to diagnose endometriosis, and a negative biopsy does not rule out the presence of this disease in other areas within the abdomen.
Ultrasonography, MRI and CT scan. An ultrasound uses sound waves to visualize the inside of your pelvic region, while an MRI uses magnets and a CT scan uses radiation. While these tests can occasionally suggest endometriosis, particularly ovarian endometriotic cysts called "endometrioma," or rule out other conditions, none can definitively confirm the condition.
At this point, there is no established noninvasive method to diagnosis endometriosis, which is frustrating for both women and their health care providers.
Pelvic exam. Your doctor will perform a physical examination, including a pelvic exam, to aid in the evaluation. The examination will not diagnose endometriosis but may allow your doctor to feel nodules, areas of tenderness or masses on the ovaries that may suggest endometriosis.
Medical history. A detailed medical history may offer your health care professional the earliest clues in making the correct diagnosis.
There is no universal cure for endometriosis. However, there are a number of options available for treating and managing the disease after diagnosis. They fall into four categories: medical, surgical, alternative treatments and pregnancy.
If endometriosis has caused infertility, you have several treatment options, including surgery, drugs to stimulate ovulation, typically administered with intrauterine insemination or in vitro fertilization. The appropriate approach would be based on the results of a complete evaluation including an assessment of the male partner. In general, medicines that suppress the painful symptoms of endometriosis, such as GnRH agonists, oral contraceptives and danazol, do not improve the likelihood of pregnancy. The only possible exception would be that the use of a course of GnRH agonists before in vitro fertilization may improve outcomes in certain endometriosis patients, according to several recent studies.
There is no known way to prevent endometriosis. However, some health care professionals believe there might be a certain level of protection against the disease if you begin having children early in life and have more than one child.
Additionally, you may prevent or delay the development of endometriosis with an early diagnosis and treatment of any menstrual obstruction, a condition in which a vaginal cyst, vaginal tumor or other growth or lesion prevents endometrial tissue from leaving your body during menstruation.
There also is some evidence that long-term birth control pill users are less likely to develop endometriosis.
Review the following Questions to Ask about endometriosis so you're prepared to discuss this important health issue with your health care professional:
The most widely accepted cause of endometriosis is retrograde menstruation. This occurs when tissue from the uterine lining, called endometrial tissue, flows backward through your fallopian tubes while you're menstruating and implants in various sites, most commonly in the pelvis. The tissue gets trapped and can't leave the body.
However, no matter where it is in the body, endometrial tissue still responds to your hormones each month. This tissue can become inflamed, bleed and develop into scar tissue. When the tissue is attached to organs in the pelvic and abdominal cavities, it may cause severe pain, infertility and other problems.
Other theories suggest that alterations in the immune system response, hormonal imbalances or environmental causes may be related to the development of endometriosis. Experts find strong evidence suggesting a genetic link.
Pain in the pelvic region ranging from very mild to severe is the most common symptom, but you may not experience any symptoms. Some women describe the pain as sharp and burning. It may last all month long, but is usually worse during menstruation, deep penetration during intercourse or bowel movements. Other symptoms may include:
Even without a definitive diagnosis, your health care professional may still prescribe hormonal treatments. If the pain decreases, there is an assumption that endometriosis was the cause of the pain. However, endometriosis cannot be definitively diagnosed without laparoscopy and biopsy.
Yes, you can. The majority of women who have endometriosis are fertile, and there are many who have the disease and go on to have children. However, the likelihood of infertility does increase in women with endometriosis of all stages.
No. Experts don't know definitively what causes the condition so they don't know how to prevent it. Research suggests that having children early, having more than one child and long-term use of oral contraceptives may reduce the risk. However, many other factors determine if and when a woman should have children.
The most common medical therapies for endometriosis are hormonal contraceptives and other hormonal regimens, such as GnRH agonists (gonadotropin-releasing hormone drugs), which reduce estrogen release, limiting the effects of hormones on the endometrial tissue. Danazol, a synthetic androgen, is also used, but it can cause some undesirable side effects, including weight gain, hirsutism (hair growth) and lowering of the voice. Surgical treatments range from removing only the endometrial implants via laparoscopy to removing the uterus and ovaries.
It's tough to know which treatment is best for you, especially since very few comparative studies have been conducted to determine which approach is better. There are pros and cons for all treatments. Most women with the disease can find relief via medical therapies, and birth control pills may be used indefinitely to manage symptoms. Other women turn to surgery. However, many women try to avoid surgery to remove the uterus because it's a serious procedure that will leave them infertile and carries no guarantee of banishing endometriosis forever.
Because of the risks associated with surgery, the usual course of treatment is to proceed from the
least
invasive or risky to the more invasive treatment. That means medical treatment first.
If that doesn't work, your doctor may recommend laparoscopy, with surgery to remove the uterus as a last resort.
For information and support on coping with Endometriosis, please see the recommended organizations, books and Spanish-language resources listed below.
American Association of Gynecologic Laparoscopists (AAGL)
Website:
https://www.aagl.org
Address: 6757 Katella Avenue
Cypress, CA 90630
Hotline: 1-800-554-AAGL (1-800-554-2245)
Phone: 714-503-6200
American College of Obstetricians and Gynecologists (ACOG)
Website:
https://www.acog.org
Address: 409 12th Street, SW
P.O. Box 96920
Washington, DC 20090
Phone: 202-638-5577
Email: resources@acog.org
American Society for Reproductive Medicine (ASRM)
Website:
https://www.asrm.org
Address: 1209 Montgomery Highway
Birmingham, AL 35216
Phone: 205-978-5000
Email: asrm@asrm.org
Center for Endometriosis Care
Website:
https://www.centerforendo.com
Address: 1140 Hammond Drive
Building F, Suite 6220
Atlanta, GA 30328
Hotline: 1-866-733-5540
Endometriosis Association (EA)
Website:
https://www.endometriosisassn.org
Address: 8585 N. 76th Place
Milwaulkee, WI 53223
Phone: 414-355-2200
Endometriosis Research Center
Website:
https://www.endocenter.org
Address: 630 Ibis Drive
Delray Beach, FL 33444
Hotline: 1-800-239-7280
Phone: 561-274-7442
Books
A Gynecologist's Second Opinion: The Questions & Answers You Need to Take Charge of Your Health
by William H. Parker, Rachel L. Parker
Coping With Endometriosis
by Robert Phillips, Glenda Motta
Endometriosis: One Woman's Journey
by Jennifer Marie Lewis
Endometriosis Survival Guide: Your Guide to the Latest Treatment Options and the Best Coping Strategies
by Margot Fromer
Endometriosis: The Complete Reference for Taking Charge of Your Health
by Mary Lou Ballweg
Living Well with Endometriosis: What Your Doctor Doesn't Tell You…That You Need to Know
by Kerry-ann Morris
100 Questions & Answers About Endometriosis
by David B. Redwine
Yale Guide to Women's Reproductive Health: From Menarche to Menopause
by Mary Jane Minkin, Carol V. Wright
Spanish-language resources
American Academy of Family Physicians, Family Doctor: Endometriosis
Website:
https://familydoctor.org/online/famdoces/home/women/reproductive/gynecologic/476.html
Email:
https://familydoctor.org/online/famdoces/home/about...
Determining what the real story is when learning about endometriosis — and what you can do about it — is often harder than it should be. We set the record set.