In the crisp morning, Shelby Holland sits in a small coffee shop by the window. The 18-year-old girl shuffles closer to the table to allow a waiter to walk past her, trying to make herself smaller; less of an inconvenience. She seems warm and open, and as we talk, her internal walls slowly come down as she tells me her story.

“It started when I was probably 12 or 13,” she begins, “I was getting really bad pains and had to be hospitalised a few times because I kept passing out.”

For the last six years Shelby has lived with a condition that affects her both physically and mentally. Looking at her, you can’t see anything wrong – she walks upright without assistance, her speech is perfect, and she isn’t slow by any means.

Endometriosis, or ‘endo’, is a condition where tissue similar to what lines the walls of the uterus grows on various parts of the body, such as the bladder, lungs, intestine or even the spine. The growths are incredibly painful, causing bloating, nausea and severe cramps. On top of this, endometriosis can only be diagnosed by surgery. Worse still, it has no absolute cure, and the limited treatment options available are expensive and time-consuming.

Shelby is one of the almost 10% of women in Australia silently going about their daily lives while managing this invisible illness. An illness that makes so many normal activities a challenge.

Misunderstood Pain

On average, it takes seven years for someone to be diagnosed with endometriosis, in part because endo sufferers are often accused of exaggerating their pain.

“Endometriosis is probably one of the most misdiagnosed conditions for women,” says Dr Judy Buchholz, a clinical and neurological psychologist. “A sufferer can be told it’s premenstrual syndrome or irritable bowel syndrome. Women often go through so many tests because the pain generally occurs in various parts of the lower body.”

Andrea*, a mother-of-two with endometriosis, says that her doctor told her the pain was “psychosomatic” and it took her a long time to get recognition. Unfortunately, this is all too common.

“Chronic pain is one of those things that isn’t managed very well in the health industry currently,” Dr Buchholz explains. “Medication is relied on to give the sufferer relief and psychological consequences are often ignored.”

There is also a misconception around invisible illnesses that assumes that if someone is in pain, they won’t be getting out of bed.

But giving into the pain simply isn’t an option. “If I let myself be stopped by my endo I would never do anything,” Shelby says with a wry smile. “The mental and physical symptoms are tied together, because when you’re physically exhausted, you’re also mentally weak,” she continues.

“I think women are still seen as highly anxious beings,” says Dr Buchholz, “[People] think you’re making it up. Because you can still get around and do things when you’re in pain.”

However, this is not to say the pain is any less severe because of this stoicism. Shelby has developed a high pain threshold over recent years. She leans over and shows me her ‘pain log’ – a collection of notes on her phone where she tracks her pain patterns with a date and time stamp. She describes “tightness”, “stabbing pains”, dizziness and throwing up.

On top of this, sometimes the heat-packs Shelby uses to try and ease the pain have to be so hot to be effective, that it burns her skin.

Lack of Control

Being at the mercy of the condition, which could flare up at any moment, leaves many feeling like they have no control.

“There is a sense of not feeling like I’m on stable ground,” says Farnoush Parsiavashi, a 29-year-old who has lived with endo for the best part of two decades. “Because I never know what is around the corner or what my life is going to look like month to month. You feel very helpless in those moments.”

“I’m involved in community theatre,” says Shelby, “and sometimes I’ve been sitting in the wings, clutching a heat pack to my stomach, crying in pain, and then wiping my tears and getting on stage for my scene, trying to be normal. You just have to get on with it.”

Dr Buchholz says that as humans we are comfortable when we feel in control, and it’s a natural desire to have control over our lives and what it looks like.

“When you can’t control something, or you have difficulty in controlling something, you have that sense of helplessness or hopelessness, which leads to depression and a sense of worthlessness. And the unpredictability leads to feelings of anxiety.”

Loss of Identity

Endometriosis can damage mental health by eating away at someone’s sense of personal identity, which can lead to depression and anxiety. Identity can be attached to many things, including the desire to be a parent, pursuing a certain career, or being involved in certain activities.

Endometriosis can make it harder to get pregnant and increases the chances of pregnancy loss. And having the decision on whether to have children decided for you by your body is difficult for many women to accept.

“It’s easier to just tell people ‘I don’t want kids’ than to explain or fully process everything,” says Hannah*, who was diagnosed with endo 5 years ago.

Many women are also falsely told that getting pregnant will ‘cure’ their endometriosis, which only adds insult to injury.

“This is misleading,” says Donna Ciccia, co-founder of Endometriosis Australia. “Getting pregnant may slow the symptoms down for a while, but there is no guarantee they won’t come back after you’ve given birth.”

Evidence of a negative impact on career has been documented in a study in Europe, which found that women with endometriosis are less likely to work in their desired profession and have stronger health-related limitations in their career decisions.

Naomi* works as an apprentice hairdresser, which requires long days of standing and smiling, two things that are difficult to do when you’re in a lot of pain.

“I actually had a cystic ovary burst two weeks ago while I was at work,” she says. She took an extended period off to recover but then her employer stopped offering her work.

Hannah* also struggles with work. “I was away so much that I missed out on career opportunities and because I wasn’t improving and building relationships like everyone else, I wasn’t getting promoted.”

And this is not just limited to career, either. Schooling can also be impacted, with girls as young as 7, but more commonly in their teens, needing to take significant time off school.

“I was so sick in year 11 that I had to take weeks off,” says Shelby, “[The school] almost wouldn’t let me graduate because my attendance was close to below 85%.”

Financial pain

And, if the physical pain, anxiety and loss of identity weren’t enough, then there’s the cost.

Shelby had a laparoscopy (key-hole) surgery to remove the growths in 2019, but says she already has regrowth and will likely need another surgery to remove them. And this is not uncommon.

“My endo has probably cost about $20,000 out of pocket so far,” she says, grimacing with the knowledge she could have a reasonably nice car for the same price. “The surgery to be diagnosed cost $6,000 alone.”

Although Shelby went through private healthcare to get her surgery, costing her more out-right, she says it was worth it. “I was put on the public waiting list in September 2018, and only got a call saying I had been accepted onto the waiting list in March 2019. I couldn’t keep waiting.”

Many women survive day-to-day by relying on strong painkiller medication, including drugs like codeine and marijuana. However, there is the risk that over time these medications may become less effective as your body builds up a tolerance.

“Unfortunately, the body gets used to pain medication,” says Dr Buchholz. “And generally what happens is there’s an increase or change in pain medication to get the same decrease in pain that you had previously.”

Moving Forward

The lifelong ordeal of diagnosis, ongoing treatment and the search for recognition of the pain is exhausting, and it can often leave these women feeling isolated.

“How can we help?” I ask Shelby after a long silence, and she pulls her gaze back from the window.

“It’s quite low on the priority list,” she continues. “People think that because you can’t die from it, why fund research into it?”

This comment echoes around my head even hours after we’ve left the café. As a society, we’ve normalised period pain to the point where women are being told to stop complaining and just get on with life, even when it’s crippling them.

In 2018 the Minister for Health, Greg Hunt, launched the National Action Plan for Endometriosis, which commits $4.7 million to selected research facilities to do research into endo.

Donna Ciccia from Endometriosis Australia says this is only the beginning of a long journey. The invisibility of the condition means recognition and, therefore, progress will be slow and steady.

She says, encouragingly, part of the national plan is about awareness and education. A priority will be to make sure patients have more information about the condition and health professionals are better equipped to treat those patients.

For Shelby Holland, the fact the condition is being spoken about publicly is a start.

“We need to talk about it more, to break the taboo,” says Shelby, “I think people are dismissive because they think ‘oh, it’s a woman’s disease’ and don’t think about all the women they might know who are quietly living with it.”

*Names have been changed to protect the privacy of these people.

Audio feature

Jacqui, 25, was diagnosed with endometriosis earlier this year, but she has been experiencing painful symptoms with psychological side-effects since 2013.

She tells Eliza Maddever her list of symptoms is long and exhausting.

Listen to the interview here.