She’s since had five laparoscopic surgeries to remove endometriosis. Below, she asks why this disease – affecting one in ten women – has remained hidden for so long.
Last month, Health Minister Greg Hunt announced that the federal government would create a national action plan to improve the treatment of endometriosis, a chronic inflammatory disease that affects at least one in ten Australian women.
The national action plan promises to improve awareness and understanding of the disease, as well as make an immediate contribution of $160,000 for research into better treatments for the condition. Alongside this plan, Hunt issued an apology to the 600,000 women who live with this disease in Australia and who have largely suffered in silence until now.
This apology was much-needed and long overdue: the disease is estimated to have both the same prevalence and impact on quality of life as diabetes, but receives less than 5% of the funding. Misunderstanding of the condition is widespread, among the medical profession as well as the public.
I know this all too well, as I will detail below.
Lack of awareness and understanding of the disease and the way it operates has resulted in an average wait of eight to nine years between a patient’s first symptoms and her diagnosis.
Endometriosis is an inflammatory disease involving tissue from the uterus growing in other parts of the abdomen. The tissue grows and spreads on the outside of various organs to which it does not belong – the kidneys, liver, bowels, and sometimes even the lungs and throat – and becomes inflamed and causes a great deal of pain and internal bleeding. The foreign tissue, if left untreated, can build up and cause dysfunction in any of these abdominal organs, and can also cause infertility.
Although the impacts of this condition are potentially very serious, there is no treatment or cure. There is not even an accessible form of diagnosis: the only way to achieve a definitive diagnosis is through an invasive laparoscopic surgery, meaning that even if a doctor knows enough about the condition to suspect you have it, they have to also be sufficiently certain of this suspicion to warrant the significant physical and economic costs of surgery.
No known treatment
Even if you get past this barrier and get a diagnosis, the picture doesn’t get much brighter – because there is no known treatment for the disease, the only way to manage it is to have regular invasive surgeries to physically remove the foreign tissue from your body. This usually means having the surgery every two or so years, and therefore having to regularly deal with the painful recovery that comes with it.
Even with regular surgeries, the condition remains both relentless and depleting. It causes regular pain and bleeding and a litany of other symptoms that gradually worsen as the amount of damaged tissue grows.
Without any reliable treatment apart from surgery, women who suffer from this condition are condemned to live their lives in a cycle that is as draining as it is repetitive – having surgery, recovering, experiencing a brief moment of post-surgery relief, waiting and watching as the condition returns, grows and spreads and the pain and symptoms grow with it, counting down the months until the next surgery, recovering, and starting the process over again.
The condition is not life-threatening. But it is both chronic and debilitating, and the cost to the women who live with it is profound. They are asked to live with illness in a way that no other suffers of serious chronic health conditions are, because in respect of all comparable conditions we have poured time, money and energy into developing treatments that render life with these diseases more bearable. Unlike its counterparts, this disease, until now, has largely been ignored. Why?
Downplaying female pain
Endometriosis, by its very nature, plays into our most insidious and damaging stereotypes of women and femininity, and for decades the medical profession has fallen into the familiar trap of dismissing and downplaying female pain.
A woman presenting to a doctor with pain will often find herself facing a complex web of conscious and unconscious biases that inform how seriously – or otherwise – her condition will be taken.
Studies have shown that doctors are more likely to dismiss complaints of acute pain when they come from women than men, and further studies have shown that when female pain is recognised and treated, it is treated less aggressively than the same degree of pain reported by men.
A UK study found that women presenting to emergency with pain will wait an average of 16 minutes longer than men presenting with the same degree of pain. Women are also given smaller doses of pain relief when they are seen by doctors in emergency.
Research has also found that doctors are more likely to assume that female pain is a result of emotional causes, whereas male pain is presumed to be a result of a physical problem.
This presumably stems from deep-seated assumption about the fragility and sensitivity of women – studies show that their pain is more likely to be seen as “hysterical” or “exaggerated” – and from our corresponding assumptions about the stoicism of men. Ironically, women have been found to have a higher pain tolerance than men overall, and so are more likely to only report pain when it is particularly serious.
In Leslie Jamison’s 2014 essay The Grand Unified Theory of Female Pain, she writes: “I think dismissing female pain as overly familiar or somehow out-of-date—twice-told, thrice-told, 1001-nights-told—masks deeper accusations: that suffering women are playing victim, going weak, or choosing self-indulgence over bravery. I think dismissing wounds offers a convenient excuse: no need to struggle with the listening or telling anymore.”
I think she’s right. And our apparent lack of interest in the listening or the telling – or, for that matter, the treating or the curing – of endometriosis thus far is a perfect example.
Endometriosis’s ability to prey on our biases about the illegitimacy of female pain is compounded by the fact that the disease itself is agile and illusive – it can create symptoms in different parts of the body at different times, causing doctors to chase down possible diagnoses in different areas of specialty – renal problems, then gynecological, then gastroenterological – ruling out each one just in time for the endometriosis to spring up somewhere else. It’s like a game of abdominal whack-a-mole, and absent a widespread understanding of the way endometriosis works, the conclusion often ends up being that the pain is imagined.
When doctors set out to find the cause of a woman’s pain and, due to the disease’s ability to perennially shape-shift, come out empty-handed, they quickly conclude that the problem is not with the woman’s body but with her mind.
The pain continues
The cruel irony, though, is that if a person’s pain is left untreated for long enough – as so many endometriosis sufferers’ is – it can in fact become learned. After years of chronic pain, the brain’s neuropathic pathways learn to send pain signals even when the diseased tissue is not inflamed or bleeding. So the longer a patient is left untreated, the more likely it is that she will report pain that has no immediate physical cause, confirming what the doctors already believed: that it was all in her head to begin with. A maddening and humiliating self-fulfilling prophecy.
What this means for endometriosis suffers, for whom pain is often the most pressing symptom, is that they can go years without ever being taken seriously by a medical professional. This is why it can take up to a decade to be diagnosed – often that’s how long it takes to find a doctor who’ll believe you when you tell them you’re suffering.
This process is also complicated by the fact that women are, in so many ways, taught to live our lives in a way that accommodates the needs of others above our own; to constantly find new ways to make ourselves small enough to fit into the limited space our society permits us.
But to be in pain is to be seen. To be in pain is to take up space. To demand attention. To ask for help.
It takes years as a woman to learn to do this, particularly when faced with a long line of doctors who wish to dismiss you. Learning to insist on the veracity and legitimacy of our own experience takes time, and that slows down the diagnosis, too.
This process, of insisting on being taken seriously in the face of persistent disbelief and dismissal, is as disheartening as it is exhausting, and it leads many women to give up on the prospect of diagnosis or treatment altogether. I would know; I was almost one of them.
My endometriosis
Those who know me well will know that endometriosis is just one small part of my increasingly complex health story, but it is a large part of the reason my symptoms went unrecognised and untreated for so long. I spent years in and out of emergency wards, specialists’ rooms and doctor’s surgeries, begging to be believed, but being met only with dismissive tones and, if I was lucky, short-term pain relief.
I saw specialist after specialist, dutifully answering their questions and learning to pinpoint the exact moment they decided I was exaggerating, lying, or showing an unpalatable degree of weakness.
Slowly I realised that I was not being treated as a credible witness to my own story. I learned to detect each tiny morsel of disbelief in the words and faces of the many doctors whose names I’ve now forgotten.
I decided to become a model patient – I perfected my story, wrote down every detail, ensured I left nothing out. I handed my histories to stranger after stranger until I barely recognised them – my medical history, my family history, my academic record, my employment status, my mental health history, my sexual health history.
I perfected the art of insisting that my pain was real and that it mattered. That I needed help.
It is very difficult to convince a doctor that you’ve lost control of your body when they’ve already decided you’ve lost your mind. But, slowly, I learned.
I found a doctor who believed me, and whom I trusted. When I eventually woke up from the surgery that confirmed by endometriosis diagnosis he looked me in the eye and said “see, I told you you’re not crazy”. He showed me pictures of the disease, sprawling like an old misshapen carpet across each of my abdominal organs.
Since then I have had four more laparoscopic surgeries to remove my endometriosis faster than it can grow. Until a sustainable treatment or cure is developed, these regular surgeries are my only option. More than once, male doctors have informed me that many women report their pain levels reducing after the birth of their first child, as if this is a realistic treatment plan.
No, I tell them. A baby is not band-aid.
I’ve mastered the art of dealing with constant pain, and I’m surrounded by doctors and loved ones who help me manage. I have health insurance, and I can afford regular surgeries and the pain medication that helps me get by. In all of these respects, I am profoundly lucky.
But the lack of awareness of the severity and complexity of endometriosis is undoubtedly the reason my condition went untreated for so long. If I’m being honest, it is also the reason I still pull taxis over in the street and pay them to let me lie down for ten minutes while I wait for painkillers to kick in, and why I waste so much energy pretending I’m not in pain when I am; all to avoid ever having to take a day off. To avoid ever having to explain myself.
At last week’s Golden Globes Oprah Winfrey heralded the #metoo movement as a signal that “a new day is on the horizon” for women. Women’s stories are being listened to and believed more now than ever. Let’s hope that the government’s national endometriosis action plan will mean that this new day will mean taking female pain seriously, too.
This tendency to disbelieve women’s stories about their own pain must be understood in the broader context of our society’s profound discomfort with female bodily autonomy. Dismissing and belittling female pain is simply another trick up the sleeve of those who wish strip us of the agency over our reproductive health and therefore our lives.
This means that each time we as women stand up and speak the truth about our pain we get a little bit closer to disarming those who wish to control us.
The government’s announcement of a national action plan is a source of long-overdue vindication for the thousands of women who have had to fight to defend the legitimacy of their pain. Let’s hope there’s more where it came from, and that 2018 is the year in which female pain is finally taken seriously.
Image: Lucia pictured above on right. Photo thanks to Anisha Khopkar.