KidsMD Health Topics

Endometriosis

  • A woman has endometriosis when the tissue that normally lines her uterus, the endometrium, grows in other places, such as the fallopian tubes, ovaries or pelvic tissue. This misplaced tissue can cause serious pelvic pain or painful menstrual periods.

    EndometriosisThe Gynecology Program at Boston Children's Hospital offers expert care to girls and young women dealing with the symptoms of endometriosis.

    • Endometriosis affects an estimated 5.5 million women in North America.
    • When endometrium, the normal lining of the uterus, grows in other places, it continues its normal menstrual duties of thickening, breaking down and bleeding away each month. Since there is nowhere for this blood to go, it stays trapped in the body, and this can cause painful cysts and scar tissue.
    • A research study done at Children's found that endometriosis was the most common diagnosis after surgery in teens with chronic pelvic pain.
    • Without treatment, endometriosis can lead to infertility. Thirty to 40 percent of women with endometriosis are infertile.
    • Adolescents can be treated so they so don't develop infertility.

    How Boston Children's Hospital approaches endometriosis

    The Center for Young Women's Health, part of the Gynecology Program at Children's, provides expert medical care, special health education programs and a wealth of information to young women who may be dealing with endometriosis. Pelvic pain and painful menstruation can be distressing for teens, and the Center provides counseling and special health education programs, including supervised online chats.

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    Boston Children's Hospital
    333 Longwood Avenue
    Across from the Main Hospital
    Boston MA 02115

      617-355-7648
  • What are the symptoms of endometriosis?

    Endometriosis can be mild, moderate or severe. Some women experience no symptoms at all, but it tends to get worse over time. If your daughter has endometriosis, she could be experiencing:

    • painful periods (dysmennorhea)
      • Pelvic pain may include lower back and abdominal pain.
      • The level of pain may not match the severity of the endometriosis.
      • Some women have mild endometriosis and severe pain, while others have a lot of endometriosis and little pain.
    • chronic pelvic pain
      • Pain may be accompanied by frequent urination, diarrhea or constipation.
    • excessive bleeding or bleeding between periods
    • infertility
      • Sometimes endometriosis is only diagnosed when a women is seeking infertility treatment.

    What causes endometriosis?

    The exact cause of endometriosis is unknown, although we do know that it runs in families. The three most accepted theories of endometriosis are:

    • Sampson's Theory: Menstrual blood filled with endometrial cells flows backward through the fallopian tubes and attaches to other surfaces outside the uterus.
    • Meyer's Theory: Cells with the potential to become endometrial cells are present in the abdomen at birth, but don't change into endometrial cells until later in a woman's life.
    • Vascular Theory: The endometrial tissue travels through the blood vessels to other tissues. It implants and grows, just as metastasizing cancer cells do. (Endometrial cells have no more chance of becoming cancerous than any other cell.)

    How will endometriosis impact my daughter's fertility?

    Endometriosis can lead to infertility, and 30 to 40 percent of women with endometriosis are infertile. However, there are successful fertility treatments for women with newly discovered endometriosis, and early treatment during adolescence can prevent infertility.

  • How does a doctor know that my daughter has endometriosis?

    There are no x-rays or blood tests to diagnose endometriosis. The only 100 percent way to be certain of the condition is to have a procedure called a laparoscopy. This surgical procedure allows a doctor to look at the pelvic organs with a tiny camera.

    Other tests that your physician may order before the laparoscopy include:

    • blood tests or vaginal cultures (to check for infection)
    • a pelvic ultrasound or MRI (to rule out other conditions)

    For Medical Professionals

    Endometriosis—the presence of extra-uterine endometrial glands and stroma that can lead to subsequent inflammation and fibrosis—is a chronic disease affecting 5 to 10 percent of women of reproductive age, most commonly occurring in adolescents. It can cause pain, infertility and significant quality of life impairment, and often presents as cyclic and noncyclic pelvic pain. Since there is no non-invasive diagnostic test, there are high rates of misdiagnosis or delayed treatment. 

    Since early diagnosis and treatment may prevent further pain, functional impairment and a cycle of lower self-esteem, depression and anxiety, primary care providers (PCPs) have a unique opportunity to intervene. The diagnostic challenge is determining when the symptoms are not dysmenorrhea and require further evaluation:

    • Ask targeted questions about personal history: Familial history, early dysmenorrhea, menarche after the age of 14, absenteeism from school during menses, pain that is resistant to non-steroidal anti-inflammatory drugs (NSAIDs) and use of combined oral contraceptives (COCs) to treat uncomfortable, heavy periods can indicate endometriosis. If there is a family history of endometriosis or infertility then the PCPs should have heightened concern. Also ask about structural abnormalities of the reproductive or renal systems.
    • A pelvic exam is not obligatory in adolescents with dysmenorrhea, but if an obstructive anomaly is suspected, a Q-tip or Calgiswab can be inserted into the vaginal canal and moved gently side-to-side to document patency. If a sexually active patient presents with noncyclic pain, a pelvic exam can help rule out pregnancy, an indolent form of pelvic inflammatory disease or an ovarian mass.
    • A blood count and erythrocyte sedimentation rate, urinalysis and culture, sexually transmitted infection screen and pregnancy test should be considered to rule out other conditions that may mimic endometriosis such as urinary tract infection or pelvic inflammatory disease.
    • If pain persists through NSAID use or interferes with daily activities, a combination of NSAIDs and cyclic hormonal treatment for three months should be trialed to prevent hormonal cycling and ovulation, restrict endometrial growth and decrease bleeding.
    • Patients should be encouraged to keep a symptom diary detailing menstrual pain and any other patterns. Treatment efficacy should be evaluated every three to six months.
    • Progestin-only pills should not be used as first-line therapy, but as an alternative for patients with contraindications to estrogen use, such as complex migraines.

    Refer to a specialist when pain relief is not sufficient to enable regular daily activities.

    For adolescents who have persistence of pain symptoms on cyclic COCs and NSAIDS, endometriosis is suspected and a laparoscopy is indicated for diagnosis and treatment.

    For more information, please call the Center for Young Women’s Health at 617-355-2994.

  • At Children's, we're studying the way complementary and alternative therapies, such as acupuncture, may help manage symptoms alone or in conjunction with other forms of treatment.

    Marc Laufer, MD, chief of the Division of Gynecology at Children's Hospital Boston

    Endometriosis treatment at Boston Children's Hospital

    At Boston Children's Hospital, our team of specialists can help you and your daughter decide which treatment best fits her endometriosis symptoms.

    • hormonal treatments
      • Hormonal treatmentsuch as birth control pills taken continuously can relieve symptoms in many patients.
      • A gonadotropin-releasing hormone agonist (Gn-RH), such as Lupron-Depot®, works by shutting off hormones made by the ovaries and temporarily stopping your period. It lowers the body's estrogen level and causes the endometrial implants to shrink. This medicine has been approved by the Food and Drug Administration to be used for six months at a time. If used for over six months, studies have found it can cause changes in bone density. When the GnRH agonist therapy is needed for longer than six months, it is used with another therapy to protect your bones.
      • Danazol is a drug that blocks the production of ovarian-stimulating hormones, preventing menstruation and the symptoms of endometriosis. However, danazol can cause unwanted side effects, such as acne and facial hair.
      • Medroxyprogesterone (Depo-Provera) is aninjectable drug that stops menstruation and the growth of endometrial implants. It stops the pain of endometriosis, but it can also lead to weight gain, decreased bone production and depressed mood.
      • Aromatase inhibitors are agents used to treat breast cancer and endometriosis. They work by blocking the production of estrogen, which deprives the endometrial cells the estrogen they need to grow.
    • surgery
      • During a laparoscopy, a physician destroys the visible endometriosis. Many teens find relief from the symptoms after this procedure, but some find the pain returns over time.
    • pain treatment services, such as biofeedback or physical therapy
    • Hysterectomy is a last resort for women who no longer desire children and experience severe pain.

    What can my daughter do for herself?

    • Girls with endometriosis should always help their bodies cope with pain by exercising regularly and following a healthy diet.
    • When she goes to talk with her physician about her symptoms, she should bring a pain diary for her doctor to review.
    • Teen girls between 13 and 22 years old with endometriosis are invited to attend an online support group and an monthly Internet chat: youngwomenshealth.org/chat.html
  • Up to 15 percent of women suffer from endometriosis, in which tissue normally found in the uterus grows elsewhere in the body. Now, a discovery that certain immune cells trigger angiogenesis—the formation of new blood vessels—opens the possibility of more effective, less toxic treatments.

    Angiogenesis, which stimulates growth of cancerous tumors, also encourages small, symptomless endometriosis lesions to enlarge, causing pelvic pain and infertility. Working in a mouse model, research fellow Ofer Fainaru, MD, PhD, and colleagues in Vascular Biology found that dendritic cells, part of the immune system, invade endometriosis lesions, and that new vessels soon form nearby. Fainaru thinks the dendritic cells send signals that attract endothelial cells, which help build blood vessels, to the lesions.

    If the findings hold true in humans, Fainaru hopes to find a way to kill or alter dendritic cells so that endometriosis lesions remain tiny and harmless. The study was published online in September by the journal FASEB; Judah Folkman, MD, director of the Vascular Biology Program, was senior author.

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