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									                                                            ENDOMETRIOSIS AWARENESS &
                                                               EDUCATION TOOLKIT

                   About Endometriosis & Frequently Asked Questions

What is endometriosis?

Endometriosis is a painful disease that affects millions of women worldwide. It occurs when
tissue, similar to the lining of the uterus, grows outside of the uterus and attaches to other
parts of the body. Usually it will attach to the ovaries, fallopian tubes, tissue immediately
surrounding the uterus, and the lining of the pelvic cavity. The endometrial tissue thickens,
breaks down and bleeds with each menstrual cycle, but because it has travelled outside of the
uterus, it has no way to exit one’s body. The tissue in which the endometrium is trapped
often develops into scar tissue and can bind body tissue and organs together. This can cause
severe, chronic pain and often very heavy periods, as well as lead to infertility.1

Who is affected by endometriosis?

According to the World Endometriosis Research Foundation, it is estimated that 176 million
women globally, and 8.5 million in North America are affected with endometriosis, although
the exact prevalence is not known.2 Most cases of endometriosis are diagnosed in women
ages 25-35 years of age, but these women experience an average diagnostic delay of seven
years from first presenting with symptoms, so many women have symptoms during their
teenage years.

What are the costs associated with endometriosis?

According to the World Endometriosis Research Foundation, the annual healthcare costs of
endometriosis are estimated to be $70-95 billion, or potentially $110 billion in the United
States alone.34 Women with endometriosis report a 38 percent greater loss of work

1, The Global Forum on Endometriosis.
2 World Endometriosis Research Foundation. “Facts about endometriosis”
3 Impact of Endometriosis.
4 S. Simoens1, L. Hummelshoj, and T. D’Hooghe. Human Reproduction Update, Vol.13, No.4 pp. 395–404,

2007, Endometriosis: cost estimates and methodological perspective. (in press)

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productivity than those without endometriosis, and reduced effectiveness at work accounts
for two-thirds of the annual costs associated with the disease.5

What causes endometriosis?

The cause of endometriosis is unknown. According to, the global forum
on the disease, most scientists working in the field do believe that endometriosis is
exacerbated by estrogen, and there are many theories that have been accepted, and
sometimes should be combined to explain the complexity of the disease.6 Theories for the
cause of endometriosis include:

    •   Metaplasia: The areas lining the pelvic organs possess primitive cells that are able to
        grow into other forms of tissue, such as endometrial cells.
    •   Retrograde menstruation: The cause of the phenomenon where blood from
        menstruation falls into the fallopian tubes is not completely understood. Endometrial
        tissue is also deposited in unusual locations by the backing up of menstrual flow into
        the fallopian tubes and the pelvic and abdominal cavity during menstruation and
        occurs in more than 90% of women. Why some develop endometriosis and others
        not remains unknown.
    •   Genetic disposition: There is a seven-fold risk of developing endometriosis in first
        degree relatives, and recent genome-wide studies have identified DNA variations
        which may predispose women to develop more severe types of endometriosis.
    •   Lymphatic or vascular distribution: The reason why endometriosis can end up in
        areas of the body such as the brain or lungs is that endometrial fragments may travel
        through blood vessels, the lymphatic distribution, or the vascular distribution.
    •   Immune system dysfunction: Some studies have shown alterations in the immune
        response in women with endometriosis, which may affect the body’s natural ability
        to recognize and destroy any misdirected growth of endometrial tissue.
    •   Surgery: Although rare, some believe it is possible that direct transfer of endometrial
        tissue during surgery may be responsible for endometriosis sometimes seen in
        surgical scars (such as Cesarean section scars).
    •   Dioxin exposure: According to the Endometriosis Association, there is substantial
        evidence of a connection between exposure to the chemical dioxin and

5 World Endometriosis Research Foundation. “Impact of Endometriosis.”
6 The Global Forum on Endometriosis. “Causes”
7 The Endometriosis Association. “Endometriosis and Dioxin”

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What are the symptoms of endometriosis? explains that the most common symptom of endometriosis is pelvic pain.
The pain often correlates to the menstrual cycle; however a woman with endometriosis may
also experience pain at other times during her monthly cycle. For many women, but not
everyone, the pain of endometriosis can unfortunately be so severe and debilitating that it
impacts on her life so that she may not be able to carry out day to day activities.

Pain may be felt:
    • before/during/after menstruation
    • during ovulation
    • in the bowel during menstruation
    • when passing urine
    • during or after sexual intercourse
    • in the lower back region

Other symptoms may include:
   • diarrhea or constipation (in particular in connection with menstruation)
   • abdominal bloating (in particular in connection with menstruation)
   • heavy or irregular bleeding
   • fatigue

The other well-known symptom associated with endometriosis is infertility. It is estimated
that 30-40% of women with endometriosis are sub-fertile.8

How does endometriosis lead to infertility?

Pregnancy occurs when an egg is released from an ovary, travels through the fallopian tube,
becomes fertilized by a sperm cell, and attaches itself to the uterine wall to begin
development. Endometriosis can obstruct the fallopian tube and keep the egg and sperm
from uniting. However, in most cases it is not yet understood why it is harder for women
with endometriosis to become pregnant. It is somewhat a myth that women with
endometriosis are infertile, but it is reality that 30-40% of them are more likely to have
trouble conceiving.

8 The Global Forum on Endometriosis. “Symptoms”

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How is endometriosis diagnosed?

Doctors can often determine an endometriosis diagnosis in women who experience
symptoms such as the presence of pelvic pain and related findings during a physical
examination. Sometimes, doctors can feel irregular tissue behind the uterus and around the
pelvic wall during a recto-vaginal exam. At other times, no irregularities are felt, but if the
examination itself causes unusual pain or discomfort, it can lead a doctor to believe that a
woman has endometriosis.

Symptoms and physical examinations cannot solely determine an endometriosis diagnosis.
Ultrasounds or MRIs can be used to take imaging of a woman’s body and find ovarian cysts
that can determine endometriosis, but smaller lesions or implants may not show. However, a
confirmation of endometriosis diagnosis requires surgical confirmation, which can be carried
out via a laparoscopy. A skinny tube shaped instrument, called a laparoscope, is inserted
through a tiny cut made underneath the navel, enabling the surgeon to look for
endometriosis. Whereas doctors can diagnose endometriosis just by seeing the endometriosis
lesions, a definitive diagnosis requires a small sample of tissue and studies it under a

How is endometriosis treated?

There is no cure for endometriosis but there are many different treatments to deal with the
variety of pain, infertility, and related issues that it causes. 9

Over-the-counter painkillers are often used to reduce pain associated with some of the
symptoms. Aspirin, acetaminophen, and ibuprofen are often used for symptom relief. If the
pain is more severe, a doctor may prescribe a prescription pain killer, but it is important to
be aware of adverse side effects including pain killer addiction.

Hormonal treatments are used to regulate or change menstrual periods. Birth control pills,
can be used to control a woman’s menstrual cycle and decrease the amount of menstrual
flow – or eliminate the period altogether if taken continuously. There are various progestins
which can also be used to eliminate menstruation, but in some women they may have more
side effects than the The Pill. GnRH analogues are a hormonal treatment that suppresses
estrogen and creates a temporary “menopause” allowing endometriosis symptoms subside.
The menopausal side effects can be an issue, which is why this drug should not be taken
without add-back therapy (HRT). According to the U.S. Library of Medicine, another
treatment for endometriosis, Danazol, lowers the levels of estrogen and progesterone in a
woman's body. The male hormone stops a woman's period or makes it come less often. It

9World Endometriosis Research Foundation. “Treatments”

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has many side effects, however, such as weight gain, fatigue, smaller breasts, and facial hair

Surgical treatments are sometimes are the first line of therapy, and are also used when
patients do not respond to pain or hormonal treatments. Since surgery is the only way to
diagnose definitively, it is preferred by many, who want to rule out all other causes – and the
disease can be effectively removed during the same procedure if the surgeon is sufficiently
skilled to do so. Radical surgery can be necessary in severe cases, and involves a
hysterectomy, which is the removal of all growths, and the removal of the ovaries and the
uterus. It is only effective if all the endometriotic implants are removed at the same time. It
is considered a treatment of last resort and patient advocates view it as a procedure to avoid.
More research into the disease mechanisms of endometriosis could help identify better
treatments and alternatives to drastic procedures such as hysterectomy.

Additional treatment options may include acupuncture, nutritional therapy, traditional
Chinese medicine (TCM), homeopathy, allergy management, and immuno-therapy, though
there is no scientific evidence to back up these therapies.

  US National Library of Medicine, National Institute of Health. “Danazol”

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