7 endometriosis facts I've learnt since my diagnosis

I never expected to be diagnosed with endometriosis.

My only symptom was period pain, and more recently, unexplained infertility.

But my specialist seemed adamant a laparoscopy was worth doing to investigate.

Well, he found — and cut out — a lot of it.

Endometriosis (or 'endo' as it is often referred to) is a disease in which tissue similar to the lining of the womb grows in other parts of the body.

One of the first things I learnt after my diagnosis is that symptoms and pain levels aren't always indicative of how much endo you have.

You may have debilitating chronic pain and very little endo. Or, as in my case, not a lot of symptoms but plenty of endo.

And the disease is much more common than people might think, explains Mike Armour, a senior research fellow from Western Sydney University.

"About one in nine women in Australia are likely to have endometriosis based on the most recent estimates," he says.

"That's around the same as diabetes."

Dr Armour says a better understanding of the condition is needed to encourage more people to seek help.

I spoke to Dr Armour and Endometriosis Australia CEO Donna Ciccia to unpack some of the most surprising facts about this condition.

1. It can only be diagnosed through surgery

Endometriosis can only be correctly diagnosed through surgical intervention, says Ms Ciccia.

This is done with a laparoscopy, where a thin telescope is placed into the abdomen through a hole in the belly button, performed under a general anaesthetic.

A doctor can see your organs and assess the pelvis and abdomen.

Tissue that is thought to contain endo is removed at the time of the laparoscopy (more incisions are required for this) and sent to a pathologist to be viewed under a microscope to confirm the diagnosis.

2. Pain is not indicative of the severity

Pain levels are not related to the extent of the disease.

Dr Armour says this is probably due, at least in part, to changes in the way the brain processes pain in people with endo.

"We think there might be some issues with areas that are involved in pain modulation, and this means that even a small amount of endometriosis can cause significant pain and other symptoms," he says.

3. Period pain that affects your everyday life is not normal

One of the biggest reasons there is a delay in people with endometriosis being diagnosed is the idea that significant period pain is normal and should be tolerated.

Some mild pain in the first 48 hours can be normal for some women, according to Dr Armour, but both he and Ms Cicca stress pain that lasts longer or interrupts your everyday activities is not.

"If your period pain puts your life on hold you should get it investigated. It is not normal to be missing school, work, sport or social events due to period pain," Ms Ciccia says.

Dr Armour's research has found it was almost three years on average between someone having symptoms and them seeking help.

"When women, especially younger women, complain of period pain, the idea it's 'normal' is commonly reinforced by parents, peers and unfortunately often doctors as well."

4. It can impact infertility, but how much is debated

Endo can affect fertility, but there is debate on just how significant that impact is, says Dr Armour.

It's often cited that up to 50 per cent of women with endo will experience infertility for a range of reasons including pelvic damage and impact on the quality of eggs.

But as Dr Kate Young from the Queensland University of Technology writes, higher quality research conducted from population databases and surveys typically finds about 10 to 15 per cent of women diagnosed with endo are also diagnosed with infertility.

5. Pregnancy is not a cure

There is no evidence to suggest pregnancy can 'cure' endometriosis, explains Dr Armour.

"Symptoms of endometriosis may reduce during pregnancy due to low estrogen levels, but are likely to return after childbirth."

Pregnancy being recommended as a natural cure appears to date back to the early 20th century, but is now classed as a myth by reputable endo support sites.

6. We don't know what causes it

The answer to why endo occurs is not known, Ms Ciccia says.

"There are so many anomalies with endometriosis and it proves to be an enigma for researchers."

Dr Armour says until recently, there has been very little funding for endo research.

"Things are improving but compared to other common diseases like diabetes and dementia there is relatively little funding, and this is slowing down progress in understanding this condition."

Ms Ciccia says many people diagnosed with endo are surprised to learn while it most commonly occurs in the lower abdomen or pelvis, it can also be found anywhere in the body.

7. Endo is an invisible, often isolating disorder

Dr Armour says if there was one thing more people should know about endo, it's how much it can impact someone's life.

"From missing work and school, to difficulties in romantic and sexual relationships due to the high incidence of pain during or after sex, to losing friends — often due to having to cancel plans at the last minute due to pain — struggling with sub-fertility, the list goes on.

"All of this happens while the person looks completely healthy most of the time."