Frequently Asked Questions

Endometriosis is a condition where endometrial tissue, normally found in the uterus' lining and shed during a menstrual period, is found elsewhere in the body.

Endometriosis lesions can be found anywhere in the pelvic cavity — on or in the ovaries, the fallopian tubes, and on the pelvic sidewall. Other common sites include the uterosacral ligaments, the cul-de-sac behind the uterus and in the recto-vaginal septum. In addition, these lesions can be found in other places within the pelvis including on the bladder, large or small bowel, and appendix. In some cases, lesions may even be found in the chest cavity.

The main symptoms of endometriosis are pelvic pain, adhesions and infertility. Endometriosis is found in 15 to 80 percent of women with chronic pelvic pain, and in 21 to 65 percent of women investigated for infertility. The most common symptom of endometriosis is pelvic pain. For many women, the pain of endometriosis is so severe and debilitating that it impacts their lives in significant ways. For other women, the pain of endometriosis is somewhat more mild.

Pain from endometriosis often occurs with the menstrual period, but a woman with endometriosis may also experience pain at other times in her cycle, such as with intercourse and bowel movements. Other symptoms of endometriosis include diarrhea, constipation, abdominal bloating, irregular bleeding and fatigue.

Endometriosis can also cause scar tissue and adhesions to develop that can distort a woman's internal anatomy. In advanced stages, this can be severe, and internal organs such as the uterus, ovaries and bowel may be stuck together.

There is no easy test to diagnose endometriosis. In one study, the average time from the onset of symptoms to the surgical diagnosis of endometriosis was 12 years. The best way to definitively diagnose endometriosis is to perform laparoscopic (keyhole) surgery and to take a biopsy of the tissue.

Surgery is an expensive, invasive procedure. Further, if the surgeon is not a specialist or experienced in recognizing endometriosis, he or she may not accurately diagnose whether endometriosis is present or not.

Other tests a gynecologist may perform include ultrasounds, MRI scans and gynecological examinations. While none of these tests can definitively rule out the presence of endometriosis, they can suggest when the disease is present.

In general, treatment for endometriosis includes pain medications, hormonal suppression or surgery.

Pain medications and hormonal suppression treat the symptoms of endometriosis. An example of hormonal suppression is when a doctor prescribes a combination of birth control pills that create a sort of "chemical pregnancy," or, alternately, when he or she prescribes gonadotropin agonists or antagonists that create a "chemical menopause." These medications are used to suppress the endometriosis, which can alleviate symptoms, but they do not treat infertility.

Surgery is the only treatment that can remove the disease and restore normal anatomy, which is potentially curative for women who suffer from endometriosis.

At the Center for Endometriosis, the surgical approach to endometriosis is to try to achieve complete removal of all areas suggestive of endometriosis — both typical and atypical.

While excision is not proven to be superior to ablation, excision of areas thought to have endometriosis has a number of advantages — the lesion is excised down to normal tissue, ensuring its complete removal, fewer areas are produced that can lead to adhesions, and the material removed is sent to pathology for a definitive diagnosis.

Evidence shows that complete excision (even in teenagers) by an expert can potentially cure endometriosis and can eradicate disease. It also implies the importance of early removal, to prevent disease progression and preserve fertility, and indicates that these results do not require long-term hormonal suppression.

Definitive therapy for endometriosis is considered by most experts to be removal of the uterus (so that the woman no longer has the pain associated with her periods) and removal of both ovaries.

Some have proposed, however, that complete removal of endometriosis itself be considered a form of definitive. This sometimes requires removal of the uterus (if child-bearing is complete), since the uterus itself can have a disease called adenomyosis. However, removing the uterus and ovaries does not eliminate the disease itself, and removes hormonal production of the ovaries, which may be beneficial.

There is a procedure that has shown benefits for patients who have central pelvic pain caused by endometriosis but who are resistant to surgical treatment. The procedure is called presacral neurectomy and it can be performed by laparoscopy.

This procedure is not for everyone, so you will need to research the procedure and talk with your doctor to determine if it is right for you.

Good surgical technique is the best way to prevent adhesions. In addition, there are fluids or barriers that can be used to prevent the development or recurrence of adhesions. These include a fluid called Adept (a clear fluid left in the abdomen after the procedure which is then absorbed in a few days), Goretex (a non-absorbable barrier which has to be removed in a second procedure), and a compound called Seprafilm (made up of chemically modified sugars, some of which occur naturally in the human body).