Frequently Asked Questions (FAQs)

About endometriosis

What is endometriosis?
Endometriosis happens when tissue, similar to the kind that lines the uterus every month, grows somewhere else in your body. That ‘somewhere else’ is usually the abdomen. This misplaced tissue develops into growths or lesions, which respond to your menstrual cycle in the same way that the tissue in the uterus does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows out of the body through the vagina, but the blood and tissue shed from endometriotic growth has no way of leaving the body. This results in inflammation and scarring (adhesions), which can cause the painful symptoms of endometriosis and may contribute to difficulty getting pregnant or infertility.

What causes endometriosis?
The short answer is no one really knows -- but there are lots of theories. The ‘retrograde menstruation theory’ suggests that during your period, some of the menstrual tissue backs up through the Fallopian tubes, implants in the abdomen, and then starts to grow. However, many women who do not have endometriosis also experience retrograde menstruation. Some experts believe that in women with endometriosis, an immune system problem or a hormonal problem enables this tissue to develop into endometriosis.

Another theory suggests that endometrial tissue is distributed from the uterus to other parts of the body through the lymph system or through the blood system. A genetic theory suggests that it may be carried in the genes, making it more likely for some families to have several people with endometriosis.

Who is at risk for endometriosis?
Any woman of reproductive age can have endometriosis — it is estimated that five to 10 percent of women in this category are affected. Studies indicate that the probability of endometriosis is three to 10 times greater for a woman whose mother or sisters also have the disease. Women with obstructed reproductive tracts are also at increased risk for endometriosis. Having trouble conceiving or having a prolonged interval since pregnancy is associated with an increased risk of endometriosis.

The highest incidence of endometriosis is in women who undergo laparoscopic assessment of infertility or pelvic pain: endometriosis will be diagnosed in 20 to 50 per cent of these women.

When does endometriosis develop?
The symptoms of endometriosis do not always appear as soon as a girl begins menstruating; the disease may develop slowly and symptoms could only appear later in life.

However, it is increasingly apparent that symptoms of endometriosis may begin in adolescence. It is important for health-care professionals assessing young women with pelvic pain and menstrual cramps to consider endometriosis as a diagnosis. Up to 40 per cent of women with endometriosis had symptoms starting before the age of 15.

What are other causes for my pain?
Many symptoms of endometriosis are also symptoms for a variety of other conditions. When your health-care professional is evaluating your symptoms and performing tests, he or she will also be looking for signs of other problems.

For example, painful bowel movements or gastrointestinal pain could be caused by irritable bowel syndrome, inflammatory bowel disease or chronic constipation. Ovary-related pain could be caused by ovulation pain (Mittelschmerz) or ovarian cysts. There are many potential causes for the painful symptoms you are experiencing; your health-care professional may talk to you about the different problems that might be causing your pain, and will work with you to come to a correct diagnosis.

Diagnosis

If I am experiencing pelvic pain, how long should I wait before I see a doctor?
If you experience pain in your abdominal and/or pelvic area, and the pain persists for three months or more, you should seek medical advice. This pain may be worse just before, or during your period, or when you go to the bathroom or have sexual intercourse. However sometimes endometriosis can cause no detectable symptoms. Some women find out they have endometriosis when they have trouble getting pregnant.

Why does diagnosis take so long?
It can sometimes take seven to 12 years from the onset of symptoms to a definitive diagnosis of endometriosis. This is too long, so health-care professionals are always looking for ways to speed up the diagnostic process.
Even though endometriosis has been researched extensively, it is a complex disease that can be challenging to diagnose and treat. Many symptoms of endometriosis – severe, painful menstrual cramps, painful intercourse, and gastrointestinal upsets such as diarrhea, constipation, and nausea – are similar to those for a wide variety of other conditions.

However, progress is being made. For example, we now know that endometriotic growths have a much wider range of appearances than previously thought. Because they are now able to watch for this wide range of growth types, health-care professionals are identifying endometriosis more frequently and earlier than they used to.

It’s also helpful to understand that diagnosing endometriosis isn’t straightforward. The only way to definitively diagnose endometriosis is to see it, and that can only be done through surgery. Instead, health-care professionals use the process of differential diagnosis – they rule out other causes for the symptoms. That is why a diagnosis can take time.

Without a laparoscopy, how do I know for sure that I have endometriosis?
In many cases, your health-care professional will recommend appropriate treatment based on the information collected from medical-history questions, physical exams and imaging tests. Pelvic pain that is not diagnosed as normal menstrual pain is usually considered endometriosis, unless another cause is found.

There is no cure for endometriosis; treatments are aimed at alleviating symptoms. For women with severe pelvic pain that is interfering with their quality of life, the primary goal is to manage their pain regardless of the diagnosis. The pain is best managed by decreasing inflammation; these kinds of treatments are applicable to pelvic pain whether a diagnosis of endometriosis is made or not.

I have no pain or symptoms; why have I been diagnosed with endometriosis?
Some women with endometriosis may not experience any symptoms at all, and will never be aware they have the disease. For other women, the pain associated with endometriosis can lead to fatigue, feelings of depression and isolation, problems with sex and relationships, and difficulty fulfilling work and social commitments.
Endometriosis is only treated when either pain or infertility is a problem. Otherwise, endometriosis does not require any medical or surgical treatment. If endometriosis is not a problem for you, there is no need to treat it.

What is a CA-125 test?
Some women with endometriosis have an elevated level of CA-125 in their blood. There is a blood test to detect a woman’s levels of CA-125, but scientific evidence suggests that this is not usually an effective diagnostic tool. Women with moderate to severe cases of endometriosis can have normal levels of CA-125, yet women with mild cases can sometimes have high CA-125 levels.

General

Will I ever be free of endometriosis?
Endometriosis is a chronic, relapsing disorder. You and your health-care professional will need to develop a long-term plan to manage your symptoms and meet your fertility goals.

Is the amount of pain I experience related to how much endometriosis I have?
No. Generally, the symptoms you experience will depend on where your endometriosis is located and how extensive the growth is. The symptoms are different for every woman. In fact, some women with endometriosis may not experience any symptoms at all, and will never be aware they have the disease. But for other women, the pain associated with endometriosis can lead to fatigue, feelings of depression and isolation, problems with sex and relationships, and difficulty fulfilling work and social commitments.

Why doesn’t your website mention stages?
The severity of endometriosis is best described by the appearance and location of its growth, and any of your internal organs that the growth affects. However, there is also a classification system of the ‘stages’ of endometriosis, which is used when endometriosis is visualized through laparoscopy.
However, this type of classification system has limited use for management of endometriosis, since the disease stage might not correlate with a patient’s symptoms. Most health-care professionals will use terms like minimal, mild, moderate, or severe, to describe endometriosis.

Can having my appendix removed cure my endometriosis?
Appendectomy is sometimes used as a treatment for women with chronic pelvic pain, because the appendix may be affected by endometriosis or chronic inflammation. Removal of the appendix is only an effective treatment option if your appendix is clearly affected by endometriosis. If this is the case, your health-care professional will discuss appendectomy as an option with you.

I have endometriosis; am I at increased risk for developing cancer?
Some studies have suggested that women who have been diagnosed with endometriosis are at an increased risk for developing cancer, and particularly ovarian cancer. Nevertheless, less than one per cent of patients with endometriosis will develop ovarian cancer. The reason for this association between endometriosis and cancer is not clear.

As part of the diagnostic process, your health-care professional will look for signs of other causes for your symptoms, and may perform additional tests if necessary to determine the characteristics of any endometriosis that is found.

Other medical therapies

I’ve heard about oral progestin therapy – is this an option for me?
Estrogen promotes the growth of endometriosis. Since oral contraceptives contain both estrogen and progestin, progestins can also be used for the management of chronic pain in patients with endometriosis. Norethindrone acetate, an oral progestin, has been effective in relieving painful menstrual cramps and chronic pelvic pain. This drug is approved for continuous use to treat endometriosis by the U.S. Food and Drug Administration, but is not available in Canada.

Dienogest is another oral progestin, now approved for use in Canada to relieve pelvic pain related to endometriosis.

Are aromatase inhibitors an option?
Aromatase inhibitors are drugs that target aromatase, an enzyme involved in the synthesis of estrogens. Endometriotic growths, which are able to make their own estrogen, contain aromatase — the inhibitor is used to prevent the endometriotic growths from producing estrogen. The use of aromatase inhibitors is approved by Health Canada only for the treatment of breast cancer in post-menopausal women; their use for treating endometriosis in premenopausal women is still experimental.

Two pilot studies have examined pain relief after six months of daily treatment with aromatase inhibitors, and both showed significant resolution of pelvic pain in women with endometriosis who had not responded to other treatments. Progestin or combined hormonal contraception was added to the aromatase inhibitor to prevent ovarian cyst formation (which can result from the treatment). Further research is required to determine if aromatase inhibitors will be safe and effective for long-term use by women with endometriosis pain.

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This public education website is administered by the Society of Obstetricians and Gynaecologists of Canada, to provide women and their families with unbiased, accurate and up-to-date information about this disease. The information presented here is not intended to substitute for the advice of a physician.
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