WE have all kinds of different awareness campaigns for assorted diseases and ailments. Men grow moustaches for prostate cancer, everything turns pink and patronising for breast cancer, and we jump rope for heart disease.

All of these also have fun runs and deadly disease merchandise to show off just how aware you are. Being aware and raising money for medical research has become big business.

And yet, there is a disease that affects roughly one in 10 women, is extremely painful and has major economic effects, that a lot of people just don’t talk about.

It might be that endometriosis isn’t as sexy and easy to understand as some of the more popular diseases, or it could be that we are just all so embarrassed and terrified to talk about women’s periods.

But somewhere along the line, we just became OK with saying that, of course, menstruating is supposed to be debilitating painful, just like our mothers and grandmothers.

There is a hereditary element to endometriosis, so the past couple of generations may have had a really bad time, but that certainty doesn’t make it OK.

Until we start talking about it, more people are just going to think it’s normal, women aren’t going to seek medical attention for it, and money won’t go to research to fix it.

Endometriosis is a condition where endometrial tissue, which usually lines the womb, grows in places other than the uterus, sometimes creating lesions on other organs and causing heavy and excruciating periods for sufferers. It makes something that already isn’t any fun into a pit of painful despair.

Menstruating is never going to be a comfortable or pleasant experience, but if you find yourself in agony, or effectively crippled once a month, then you probably have endometriosis.

Kate Young, a PhD candidate at the Jean Hailes Research Unit at Monash University, believes a lot of the economic cost of endometriosis comes from the stigma surrounding menstruation. “The most expensive part of endometriosis isn’t the strain on the healthcare system, but the reduced productivity at work,” she says.

It’s not that women can’t do their jobs, but because of having to take a sick day every month, or not being able to work to their full potential once a month because they feel uncomfortable openly treating their symptoms.

“These women need workplaces to be a bit more flexible about the work hours, and make an environment where it’s OK for a woman to say they have a disease connected to their period. Even just make it OK for women to openly use a heat pack,” she says.

The problem with current endometriosis research is that it’s done in a lab, far removed from the people who suffer from it. Some women who have a lot of errant tissue might feel minimal side-effects, while others who don’t appear to have much may end up collapsing from the pain every month. It’s also difficult to get exact statistics on how many women suffer from endometriosis, and how exactly it affects them because of the stigma. No one talks about their period, and when they do, people who complain about severe pain are perceived as weak, sometimes even by doctors.

While there are some ways to treat the symptoms of endometriosis, there is still no cure, and no easy way to diagnose, let alone a definitive treatment.

Currently, ultrasounds and X-rays are ineffective for diagnosis; only laparoscopic surgery can give an answer, and even then, it’s not foolproof. Treatments vary from hardcore anti-inflammatories, to IUDs, to trying to cut out the misplaced tissue in surgery. Not even a hysterectomy is curative because the problem is the uterine tissue being outside the uterus, so removing the place where it should be doesn’t usually help.

Luckily, there is a way we can help sufferers, and it’s pretty easy.

All we have to do is be a little more open to talking about periods, even though they’re icky, and also train ourselves to better listen to the experiences of other women.

Parents should talk to their daughters about what to expect, and advocate for them if they might have the condition.

Men are needed for this, too: don’t freak out, just listen, and help create environments where it’s OK for women to use a heat pack once a month. Even if that heat pack is shaped as a dinosaur, I promise it won’t bite.

For more information, go to endometriosis.org.

ALICE CLARKE IS A FREELANCE JOURNALIST

TWITTER: @Alicedkc