Research has shown that a woman with a close relative (mother or sister) who has endometriosis is about 7 times more likely to develop the disease than women with no affected close relatives.

The most common symptom of endometriosis is pelvic pain, usually at menstruation. Endometriosis can also present as pain at other times during the cycle, such such as at ovulation or during sexual intercourse, or with bowel movements. Other symptoms of endometriosis can be diarrhea or constipation (often at the time of the menstrual period), abdominal bloating, heavy periods, fatigue, and in some cases infertility.

If you have pelvic pain, you may or may not have endometriosis. And women with endometriosis do not always have pelvic pain. In fact, some women with endometriosis have no symptoms at all. It is important for a woman who has persistent pelvic pain to see a physician with specialized experience in endometriosis and pelvic pain.

Yes. Endometriosis can develop in a woman at any time during her reproductive years. The reproductive years occur between the onset of the first menstrual period (menarche) and the last menstrual period (menopause).

The good news is that 60 to 70% of women with endometriosis are able to become pregnant without any difficulties. About 30 to 40% of women with endometriosis will experience infertility. Predicting whether you will have infertility depends on the severity of the disease and how long it has been present. 

Contrary to popular opinion, having a baby does not "cure" endometriosis. The health care team at the BC Women's Centre for Pelvic Pain & Endometriosis have knowledge and experience working with endometriosis and infertility; please ask them if you have any concerns.

Laparoscopy is a surgical procedure in which a small telescope-like instrument is inserted into the abdomen through a few tiny incisions. It is a minimally invasive type of surgery (MIS) that is used to diagnose and treat various conditions, including endometriosis. The surgeons at our clinic are specially trained to provide excisional laparoscopy for the removal of endometriosis.

There are some very effective treatments for endometriosis. Most specialists like to begin treatment using medications that include hormones or pain relievers. Suppression of the menstrual cycle using hormones is often an effective first line of treatment. If symptoms persist and are severe, surgical treatments can be very effective. Our gynaecologists are trained to provide advanced laparoscopic excision of endometriosis, which offers very good outcomes. See Surgery for Pelvic Pain & Endometriosis.

Surgeons can remove endometriosis with surgery, but that does not guarantee that pelvic pain will go away. There are often many contributing factors to chronic pelvic pain that need to be addressed, such musculoskeletal, bowel/bladder, vaginal/vulvar, psychosocial and nervous system factors. The best way to treat chronic pelvic pain is using an interdisciplinary approach to address all the factors.

No, there is presently not a cure for endometriosis. However, most women who are diagnosed with endometriosis can improve their quality of life and lead healthy, active lives.

Why is this study important?

Endometriosis has been understood as primarily a hormonal and inflammatory condition.  Our study suggests that gene changes ("mutations") may be involved in the growth of endometriosis cells.  While it is true that endometriosis can, in a few cases, become cancerous – it is exceptionally rare.  Therefore, we do not believe these gene changes cause cancer in women with endometriosis.  Instead, they may help us explain why endometriosis can develop, and thus potentially lead to better treatment of endometriosis in the future.

Was I born with these gene changes (mutations)?

No.  We found that these gene changes occurred only in the endometriosis cells themselves.  They are not present in other cells of the body.  Thus, there is no risk of passing on these mutations to children.

Can I request to find out if I have these mutations?

At this stage, mutation testing is not done as part of the clinical care of women with endometriosis.  However, patients at the BC Women's Centre for Pelvic Pain and Endometriosis may be informed about research studies where mutation testing may be performed.  Because these are research studies, mutation results are not released to patients.  In the future, as we gain a better understanding of how these gene changes contribute to endometriosis, mutation testing may be available to doctors and patients, but additional research is needed before this can happen.

Does this increase my chance of developing cancer?
No, the current findings do not indicate any increased risk of developing cancer. The risk of developing cancer from endometriosis is quite low (0.5%).

We hope that the discovery of these mutations is a step towards reclassifying endometriosis based on genetic information. Right now, we need to learn more about how common these mutations are, what kinds of endometriosis have mutations, and how we might use this information to tailor or improve treatment of endomeriosis.

I have endometriosis and want to take part in a study at the BC Women's Centre for Pelvic Pain and Endometriosis, but I'm not a patient.  Can my doctor enrol me?

Currently, only patients referred to the BC Women's Centre for Pelvic Pain and Endometriosis are eligible to participate in research studies for mutation testing.

I want to know if I have these mutations! – Can I get them tested at a private lab?

No.  Right now, we don't know enough about these mutations to recommend any sort of testing.  More research is needed before endometriosis mutation testing is available to the public.