Endometriosis: General Information

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What is endometriosis?

Endometriosis, pronounced, “end–o–me–tree–o–sis” can affect girls of all ages. It is a condition that occurs when tissue similar to the inside lining of the uterus is found outside of its normal location. Endometrial implants can be found on the ovaries, fallopian tubes, and ligaments that support the uterus and tissue covering the bladder and rectum. The most common locations of endometrial implants in teens are in the cul–de–sac area (behind the uterus), and near the bladder.

What are the symptoms of endometriosis?

Endometriosis causes different symptoms in young women. Pelvic pain and/or severe period cramps are the most common symptoms. There can be pain before, during or after your period. The pain may occur at regular times in your cycle or it may occur at any time during the month. It is often referred to as “chronic” pelvic pain. The location of the endometrial implants and the way in which the lesions affect the pelvic organs contribute to the symptoms teens may have. Some teens may have pain with exercise, sex, and/or after a pelvic exam. Although not as common, some teens may have painful or frequent urination, diarrhea or constipation with pelvic pain. It’s important to remember that some teens have a lot of endometriosis and have very little pain, while others may have a small amount of endometriosis and severe pain.

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What causes endometriosis?

Although we know that some young women may be slightly more likely to develop endometriosis because female relatives have it, the fact is we do not know the cause of this disease.

The three most accepted theories are:

  • Sampson’s Theory: This theory explains that the flow of menstrual blood gets “backed up” causing some of the blood to flow in a reverse direction. This process causes blood containing endometrial tissue to attach to surfaces outside of the uterus.
  • Meyer’s Theory: This theory proposes that specific cells called “metaplastic cells” change into endometrial cells and are actually present at birth.
  • Vascular Theory: This theory suggests that the endometrial tissue “travels” through the body via blood vessels. It then reaches various tissues, implants, and then grows, causing pain.

How is endometriosis diagnosed?

The ONLY way to be 100% sure of this diagnosis is to have a procedure called a laparoscopy. There is no blood test, x–ray, ultrasound, or MRI that can diagnose endometriosis at this time. A laparoscopy allows your doctor to look inside your belly at your pelvic organs with a special lens to identify the endometriosis (implants). Other tests that may be ordered before a laparoscopy might include blood tests, vaginal cultures to check for infection, ultrasound or an MRI (to make sure it’s not something else).

Why have I heard that some adult women may have trouble getting pregnant?

If endometriosis is not found and treated, it can grow and damage the fallopian tubes and ovaries. This can make it more difficult to get pregnant. Studies done at Boston Children’s Hospital have shown that if endo is found in teens and treated early, it does not tend to get worse over time.

Is there a cure for endometriosis?

While there is no cure for endometriosis, you can be treated with surgery and medicine to keep the endometriosis from getting worse and harming your future fertility. It is very helpful to use a Pain and Symptom Tracker to record your pain for a while. Another method to locate and describe your pain is “Pain Mapping”. Make a copy of your Pain and Symptom Tracker and Pain Mapping worksheets, fill them out, and bring them with you to your appointments. These tools will help you explain your pain to your medical team.

Ways to help you describe pelvic pain:

  • Type (sharp, dull, burning, aching, crampy)
  • Location (where the pain is)
  • Duration (how long the pain lasts)
  • Intensity (on a scale of 1–10, how “bad” the pain is)

What kinds of treatment are available?

Once a diagnosis of endometriosis has been made, treatment falls into the following categories.

Observation: After an evaluation and before beginning hormonal therapy, you and your gynecology (GYN) team may decide to keep track of your symptoms and try mild pain medicine. This is usually the first step for girls with premenarcheal endometriosis (who are too young to have had their first period).

Medical suppression: Hormonal treatment such as birth control pills containing estrogen and progesterone taken continuously (to stop periods) relieves symptoms in many patients. A second treatment is progesterone medicine alone. This comes as a progestin–only birth control pill in a pill pack (Nor–QD® or Camilla®) or as a regular pill that comes in a bottle Norethindrone acetate (Aygestin®).

The dose of Aygestin® can be adjusted for your body to stop your pain and bleeding. Another type of medication is a GnRH agonist, such as Leuprolide acetate (Lupron–Depot®). This medicine works by shutting off hormones made by the ovaries and temporarily stops your period. The use of GnRH agonist therapy lowers your body’s estrogen level (one of the hormones that causes your body to have periods).

Surgery: Visible endometriosis will be destroyed at the time of laparoscopy. After this procedure, many teens find relief from symptoms. Most say that their pain is better, but not completely gone. Remember, there is no cure for endometriosis. Many teens may experience pain again.

Lifestyle changes: Dealing with chronic pelvic pain can be challenging. Exercising often helps to relieve or lessen pelvic pain and menstrual cramps. Eating a balanced diet and getting enough rest also helps your body manage pain. Practicing relaxation techniques such as yoga and meditation help to ease pain too.

Pain treatment services: If you do not have relief from your symptoms, your gynecologist may refer you to a pain treatment program for an evaluation. Following an evaluation, services such as biofeedback, physical therapy, acupuncture and exercise programs may be offered.

Complementary medicine: Acupuncture, herbal remedies, homeopathy and healing touch are among popular “alternative approaches” to medical treatment. Many of these therapies can be helpful however, not every alternative approach has been scientifically proven to be safe and effective. Research studies are limited. Before experimenting with any alternative therapy, make sure that you are working with a licensed provider that has been referred to you.

What else do I need to know about endometriosis?

  • Young women CAN suffer from symptoms of endometriosis. Medical studies have found this disease in teenagers and young children.
  • Chronic pelvic pain is NOT normal. Most young women have none or mild to moderate menstrual cramps one or two days a month. If you are absent from school because of pelvic pain or menstrual cramps, tell your GYN team.
  • Endometriosis occurs among women of ALL races.
  • Endometriosis is NOT an STI (sexually transmitted infection).
  • Getting pregnant does NOT cure this disease but may improve symptoms for some women. Some women with endometriosis who have had children continue to have pain.
  • If your pain makes you feel at all disadvantaged compared to other young women or men, this is not normal. Don’t “normalize” your symptoms. If you don’t feel like you are equally capable as other young women your age (because of pelvic pain), you need to seek medical attention.
The goal of the treatment for endometriosis is aimed at relieving pain, controlling the progression of the endometriosis, and preserving fertility for future childbearing. Treatment can make a big difference in improving the quality of your life.
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