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Endometriosis occurs in approximately 15% of women in the reproductive age group.

Up to 10-20% of women with endometriosis have deep infiltrating endometriosis.

What is endometriosis?

Definition

Endometriosis is defined as the presence of normal tissue of the lining of the uterus (endometrium) in an abnormal place, usually the female pelvis. The most common sites in the pelvis are on and below the ovaries, and deep in the pelvis behind the uterus, called the Pouch of Douglas. Here the endometriosis grows on the ligaments behind the uterus and on the vagina and rectum. It also may grow on the bladder, appendix, and even sometimes in the upper abdomen or in the abdominal wall in scars of a laparoscopy or caesarean section.

Different forms

There are many presentations of endometriosis which may be identified by the surgeon at laparoscopy. A distinction is made between superficial lesions and deep infiltrating endometriosis, which is considered a separate entity.

In the majority of women with endometriosis the lining of the uterus found in the pelvis has only implanted superficially. These lesions may present as raised black or brown lesions, white discolouration, red "flame-like" streaks, clear blisters, small red blisters, bluish lesions or yellow patches.

Superficial lesions of endometriosis can never be diagnosed on ultrasound as they have no real mass, only colour, which can not be detected with ultrasound. These lesions can only be seen on laparoscopy. They are generally easy to remove during the laparoscopy.

About 20% of women however will not just allow the lining cells to implant in the pelvis, but also to infiltrate mainly into bowel, bladder, the vagina and ligaments behind the uterus (uterosacral ligaments). This form of the disease is called deep infiltrating endometriosis (DIE). Deep infiltrating endometriosis causes usually more destruction of the normal anatomy and is generally significantly more difficult to treat.. Because lesions of endometriosis infiltrate into ligaments, vagina, bowel and bladder, adhesions can occur between organs such as the bowel and the uterus or the uterus and the ovaries.

The image on the left shows a superficial deposit of endometriosis. The image on the right shows deep infiltrating endometriosis with significant adhesions. Organs such as the ovary, bowel and uterus are stuck together.

Superficial endometriosisDIE

Diagnosis

Clinical examination

A pelvic examination by the doctor can reveal localised tenderness or nodules (areas that are hard and feel like a bump) in the vagina.

Blood test

A protein CA-125 is sometimes helpful following the course of the disease when it is severe. It is less reliable as an indicator in the early stages.

Ultrasound

The ability to diagnose deep infiltrating endometriosis with transvaginal ultrasound has improved dramatically around the world in the last 5 years. A number of Australian sonologists and sonographers have developed an expertise in this area. SAFE is an initiative striving to improve the skill of most imaging specialists to diagnosis deep infiltrating endometriosis through workshops and education. This will hopefully lead to the examination being available to all Australian women with symptoms of endometriosis. Ultrasound can detect deep infiltrating endometriosis with a high degree of accuracy. The preoperative diagnosis may give a first explanation for symptoms but more importantly, it gives an indication of the extent of the disease, it provides patients with the time to think about the extent of the surgery they are prepared to submit to; and gives the surgeons an idea of what they will find during the surgery so they can prepare better for the operation and advise patients better regarding other treatment options available. Ultrasound will not detect superficial lesions so in case of a normal ultrasound a laparoscopy is still indicated when there are significant symptoms.

Laparoscopy

Laparoscopy is still the most reliable way of diagnosing all forms of endometriosis. Superficial deposits can only be seen on laparoscopy. When deep infiltrating endometriosis is unexpectedly found at laparoscopy however, the removal of endometriosis can not be completed as special preparation is required to allow removal of such lesions. The patient needs to take bowel preparation to allow surgery on the bowel, and often it is preferable to have a colorectal surgeon present at the surgery. Therefore if it is diagnosed preoperatively, the necessary preparations can be made prior to starting the first laparoscopy and repeat surgery can be avoided.

Treatment

Treatment can be surgical, hormonal or symptomatic with pain killers. The focus of this site is on improving the diagnosis of this common and debilitating disease and informing patients of this improvement. More information regarding treatment can be found on any of the website listed on the right.

Symptoms

Pain during periods

Pain with sexual intercourse

Pain on defecation with periods

Chronic pelvic pain

Abnormal bleeding

Pain when urinating

Infertility

Pain with ovulation

Fatigue

To make it confusing, some people with endometriosis have severe symptoms and others have very mild to sometimes hardly any symptoms. On the other hand, women who have the symptoms of endometriosis do not always have the disease.

 

Why does it occur?

The main mechanism believed responsible is retrograde flow of menstrual blood through the Fallopian tubes into the pelvis during periods.

 

 Retrograde flow

 

The menstrual cells, once they arrive in the pelvis, implant on or infiltrate into pelvic organs. It is uncertain why this happens to some women and not to others as 70% of women have retrograde menstruation and only 15% develop endometriosis. Amongst others, genetic factors seem to play a role. It appears that there is a genetic predisposition to endometriosis. If a first degree female relative has endometriosis (mother or sister), the chance of developing endometriosis is 30%.

Useful websites

Endometriosis Australia

World Endometriosis Society's first awareness film

Jean Hailes Endometriosis Foundation

Endometriosis Care Centre Australia

World Endometriosis Society

Global platform which links all stake holders in endometriosis