Case history: Endometriosis

PUBLISHED : Tuesday, 29 January, 2013, 12:00am
UPDATED : Tuesday, 29 January, 2013, 9:29am

It shows up as pain - pain in the lower abdomen before and during menstruation, pain during or following sexual intercourse, pain when moving your bowels, and pelvic or lower back pain during your menstrual cycle. The discomfort may be mild or intense, and it is one of the main symptoms of this condition affecting about 176 million women globally. But a woman can also suffer from this debilitating disorder and not know.

Renee Wong (whose name has been changed for reasons of patient confidentiality), 39, only discovered she had endometriosis when she had trouble conceiving. Tests revealed that her fallopian tubes were damaged from an overgrowth of endometrial tissue implants, to such an extent that they had to be removed.

"I was shocked to learn that I had endometriosis because I don't suffer from painful periods or pelvic or lower back pain," says Wong. "Without fallopian tubes, I cannot conceive naturally; so IVF is my only option if I want to start a family."

Endometriosis is a female medical disorder that occurs when cells from the womb lining grow in other areas of the body, says Dr Seng Shay Way, consultant obstetrician and gynaecologist at Raffles Women's Centre in Singapore.

Every month, a woman's ovaries produce hormones that tell the cells lining the womb to grow and thicken. The body removes these extra cells from the womb lining (endometrium) when a woman gets her period. However, if these cells - called endometrial cells - implant and grow outside her uterus, endometriosis results.

These growths are called endometrial tissue implants. Women with endometriosis typically have tissue implants on their ovaries, bowel, rectum, bladder, and on the lining of the pelvic area. The growths can occur in other areas of the body, too.

Unlike the endometrial cells in the uterus, the implants outside the uterus stay in place when a woman gets her period. They sometimes bleed a little and grow during menstruation, causing the pain and other symptoms.

But many women like Wong, who do not suffer from painful periods, only discover they have endometriosis when they have difficulty falling pregnant. The condition is typically diagnosed between the ages of 25 and 35.

Dr Greg Cario, director of the Sydney Women's Endosurgery Centre, says: "A physical examination may reveal signs of endometriosis. These include the palpation of scar tissue behind the uterus, in the vagina or in the rectum, and the presence of ovarian cysts full of blood. These cysts are formed from endometriosis tissue deep in the ovary and are called chocolate cysts."

He adds that while examination may reveal signs of endometriosis, the only way to tell for sure if you have the condition is by exploratory laparoscopy or keyhole surgery. If the pelvic pain does not respond to simple measures then this examination is mandatory.

The rationale for endometriosis is hormonal [oestrogen] exposure
Dr Seng Shay Way, consultant obstetrician and gynaecologist, Raffles Women's Centre

The cause of endometriosis is not known. One theory, says Seng, is that the endometrial cells shed during menstruation travel backwards through the fallopian tubes into the pelvis, where they implant and grow. This is called retrograde menstruation. This backward menstrual flow occurs in many women, but researchers think the immune system may be different in women with endometriosis.

Endometriosis is believed to begin around the time a woman has her first menstruation. Seng says a woman is more likely to develop endometriosis if her mother or sister also has it. Her risk is also higher if she has never had children, has frequent periods or periods that last seven or more days; or has a closed hymen, which blocks the flow of menstrual blood during her period.

Starting your period at a young age - for example, before nine - can increase the chances of developing the condition. "The rationale for endometriosis is hormonal [oestrogen] exposure, so if menses begins at a younger age, there is a longer period for hormonal exposure and thus a higher risk for endometriosis," says Seng.

According to Seng, the supposed idea that endometriosis causes infertility is controversial, but there is now more evidence to show that it can impact fertility. Besides the obvious distortion of the pelvic organs, which can impair ovulation, egg pickup and transport along the fallopian tubes, there are other biological and immunological effects that play a crucial role in fertility that have yet to be fully explained and understood.

Fortunately, with appropriate treatment, women with endometriosis can still get pregnant. Young women with mild endometriosis can get pregnant with conservative management alone. So it is important to see your doctor early if you suspect you have endometriosis.

Unfortunately, the condition is not something that goes away by itself. There is no cure, either, and treatment depends on age, severity of the symptoms and future fertility. Seng points out that hormonal (progesterone) treatments may be prescribed to relieve the symptoms. However, they do not prevent scarring or reverse the physical changes that have already occurred as a result of endometriosis. Hormonal treatments are not recommended for women who want to get pregnant.

The best treatment is surgery done by laparoscopy to cut out the abnormal tissue permanently. "It should be done by a doctor who specialises in this type of keyhole surgery, and not a general gynaecologist, because the scar tissue can grow in tricky places," says Cario. "Although a benign disease, this tissue should be treated like cancer and therefore removed carefully and completely in order to relieve the pain symptoms and improve fertility."

Seng adds that a hysterectomy can be done if the symptoms are severe and you do not want children in the future. One or both ovaries and the fallopian tubes may also be removed.

If you have mild symptoms and are not looking to start a family or have more children, it's a good idea to have examinations every six to 12 months to monitor the progress of the condition. Exercise, meditation techniques and pain medication can help ease the symptoms.