8 biggest endometriosis myths, busted

One in nine women in Australia is diagnosed with endometriosis, but there is still so much we don’t know about this insidious disease.

“Period pain is normal.” “It’s just that time of the month.”

So often this is what women and teenage girls are told when they complain of painful pelvic symptoms.

But the normalisation of period pain is the first of many misconceptions when it comes to endometriosis – an uncomfortable and, at times debilitating, inflammatory condition that affects one in nine Australian women.

It occurs when the lining of the uterus, called the endometrium, grows in other places, including the fallopian tubes, ovaries and along the pelvis.

Two experts set the record straight about this painful – and little understood – disease.

The biggest myths about endometriosis

Period pain is normal; you’re just having a really bad period

When it comes to endometriosis myths, this is one of the most harmful.

“Periods may be associated with some pain, but not the disabling pain endometriosis that sufferers experience,” says Monash University professor Caroline Gargett, head of the Endometrial Stem Cell Biology Laboratory.

“Endometriosis is actually a disorder where endometrial cells get into where they should not be, such as the pelvic cavity, and, for various reasons, the normal clearing mechanisms do not work properly. “Endometriosis pain is caused by inflammation, which is generally associated with the location of endometrial lesions growing into other organs.

“Eventually, if a woman/girl experiences frequent, regular painful episodes, the pain becomes central. Pathways are set up in the brain and it becomes hard to treat.”

• Heavy periods: What you need to know

Prepubescent girls are too young to have endometriosis

While endometriosis lesions usually start to form when menstruation starts, there are exceptions to the rule.

“Endometriosis generally occurs during the fertile stages – from menarche to menopause – and it should stop after menopause,” says Dr Najjar.

“But there are documented cases of women having endometriosis before menarche and after menopause.”

Endometriosis makes you infertile

Around 40 per cent of women who attend fertility clinics suffer endometriosis, says fertility specialist, obstetrician Dr Haider Najjar, who is an advanced endometriosis surgeon and co-founder of Create Health.

But this does not mean 40 per cent of women with endometriosis are infertile.

“Many women with endometriosis have lower fertility,” Prof Gargett says.

“This is thought to be due to the inflammation associated with endometriosis and also distorted tubes from the fibrosis of endometriosis that do not allow the sperm to travel to meet the egg, or the fertilised egg to travel to the uterus to implant and establish a pregnancy.”

Dr Najjar says women with endometriosis can also find sex painful, “and that is not to be trivialised”. “To get pregnant you need to have sex and you need to have sex frequently around the time of ovulation,” he says.

Prof Gargett says often, with the help of IVF, sufferers may eventually have a family.

• Endo and fertility: Key things you need to know

Endometriosis only causes pelvic pain

“Endometriosis can also spread to tissues outside of the pelvic area,” Dr Najjar explains.

“There have been cases of endometriosis being found in the brain, in the lungs, the diaphragm. Endometriosis is the presence of the lining of the uterus where it shouldn’t be.

“One theory is that there must be some blood transfusion. Another is that it is just a changing of the cells from normal tissue to endometrial tissue.”

Getting pregnant/going on the pill/having surgery cures endometriosis

Prof Gargett says pregnancy, the contraceptive pill or surgery may help reduce symptoms or slow the development of new endometrial lesions, but the effects are often temporary.

“There currently is no cure for endometriosis as the cause is not fully known,” she says.

Dr Najjar says doctors do often prescribe the pill to delay surgery for as long as possible, particularly for teenage girls.

“The pill can often be an effective pain management tool,” he says.

Endometriosis only causes pain during your period

“Pelvic pain can occur when you ovulate and then at any time once the disease becomes entrenched and is not adequately treated,” Prof Gargett says.

• Diet changes: What to eat if you have endometriosis

All cysts are abnormal

The ovary develops a functional cyst as the follicles growth each month, says Prof Gargett.

“These functional cysts release the egg and produce hormones,” she says.

“However large cysts that are not functioning in ovulation are abnormal and some are endometriosis.”

A functional cyst disappears after six weeks.

Endometriosis always causes severe pain

“Some women have severe symptoms, some women have no symptoms – that is still an enigma to us,” Dr Najjar says.

“The symptoms do not always correlate with the severity of the disease.”

And that can make it hard to diagnose the condition from clinical symptoms, says Prof Gargett.

Each year, the March into Yellow campaign raise awareness about endometriosis.

Written by Tianna Nadalin.