The Big Endo Problem

By Dannielle Stewart, The Daisy Diaries

This post was adapted from a blog originally appearing on The Daisy Diaries, and is republished with permission here. You can read more from The Daisy Diaries here.

Something evil is happening to my stomach. That’s the only word for it. It has turned in upon itself like an animal beaten for so many years. Sheets soaked, cramps all the way up to my neck. The pain is bright and hot and numbing, fomenting in the centre of my womb. The blood flows out of me like waves of loose ribbons.

Giselle, Skinny by Ibi Kaslik

This passage was the first time I had ever laid eyes on anything about endometriosis. I was fourteen and purchased the paperback from a bookshop in Adelaide on my holiday. The novel, as the name suggests, tells the story of 22 year old medical student Giselle who is afflicted by an eating disorder. As the story progresses Giselle is diagnosed with endometriosis after her period returns for the first time as she gains weight back. A period that is marked by horrendous pain, haemorrhage level bleeding, and weakness for Giselle. If that wasn’t some strangely autobiographical foreshadowing of how my adolescence would turn out, I don’t know what is. At fourteen I had cramps, but they were what I imagine other people consider "normal" – they only lasted a few days and rarely incapacitated me, and I forgot about them as soon as the week was over, but they were there, and they hurt. I had no need for control, no feelings of anxiety, no dark place I went to when these feelings eventuated, not yet. It was just a story, a compelling and exceedingly well written piece of prose, I had no idea that Giselle and I would turn out to share so many personality traits, and it would turn out, a diagnosis.

It was over a year until the subject would cross my mind again, sitting on the library floor, leaning against a window for warmth while my two best friends played a game beside me. It was the last day of second term and our biology teacher had let us loose in the library because we had finished the term’s work and didn’t have the texts to start next term’s work yet. I was having a not so delightful episode of cramps, episodes which were becoming more frequent, but at this point I hadn’t quite grasped their seriousness. My ever watchful teacher came to see what was wrong, seemingly disappointed that I was suffering again.

“You know, you might have endometriosis,” he said. “My flatmate has it, that’s why I think you might. She often looks a lot like you do now. You know, the pained face and the sitting on floors.”

Giselle and her catastrophic periods flashed in my mind. I thought of the chapters where she lies in her bed, incapacitated by her pain, the voice of her disease taunting her, the passage where her sister Holly uncovers the flood of blood in her bed and she is rushed to hospital, the description of the disease ravaging her organs – it was everywhere. I shook my head, that wasn’t me, this wasn’t that bad. I told him not to be silly, and that I was fine, despite his obvious skepticism. Despite the fact that in the back of my mind was a slow growing feeling that this whole business was not okay. Despite noticing that no one else seemed to be obviously in pain. Now that I am older I wonder if other girls just kept their pain a secret as well as I did. One in ten women have endometriosis, I wager I sat in class next to more than one.

The depictions of our experiences in media matter, especially when we’re young. Giselle and her unfortunate tale, with all the makings of a Shakespearean tragedian, was my first glimpse of endometriosis – one that would allow me to recognise the name when a gynaecologist suggested it five years after the fact. Giselle’s endo is what I have heard Dr Susan Evans refer to as “big endo” – the stuff that on laparoscopy looks like a catastrophic mess, dark lesions, adhesions, organs stuck together. This is also often the story when celebrities share their endometriosis stories. Endo awareness is absolutely essential and celebrities, along with everyday women, sharing stories of their experiences helps to move the topic of endometriosis into public thought. However I too share the notion alluded to by Evans, that by focusing on these stories of “big endo” we may be forgetting that essential fact – that amount of disease is not correlated with pain. That one doesn’t have to have “big endo” to have their pain be acknowledged.

Perhaps mainstream media outlets, like women’s magazines, are drawn to these depictions of big endo. They lend themselves to those lovely, sensationalist headlines that draw your gaze while scrolling, they seem shocking enough to evoke consideration from even the most apathetic of us. But for every story of someone with endometriosis so severe that organs are fused together and the reproductive and peritoneal anatomy is stained with the lesions of the disease, there is a story about a woman with mild to moderate endometriosis – the kind that often takes expert eyes to see – who is also in pain. The phrases mild and moderate don’t seem nearly as dramatic though, and so perhaps they often go unnoticed. I have heard women with mild or moderate disease, and I myself too, say “I’m lucky to only have mild disease, it could be a lot worse”. It’s said as though we need to apologise for not having insides that have slowly imploded over the years, apologise for our clean ovaries, our invisible scars. Why is this the case when most of us with endo, and a good specialist, know that pain and amount of disease aren’t as simple as more is more?

I have seen Susan Evans show a presentation with vision of a laparoscopy a number of times, where she shows us a normal reproductive tract, then a severe case of endo, and a more moderate case. She points out the the lovely ovaries – “beautiful even, mine certainly don’t look like that” she always quips – the recognisable anatomical landmarks, then she shows us what we may not have even seen; the tiny bubbles dotting themselves over the landscape of the peritoneal cavity. She goes on to explain that these tiny, clear bubbles may even be more painful than the dark lesions that we can see, as the dark ones have been there for longer. These fresh, seemingly insignificant lesions are often extremely painful. Susan always asks the audience she’s presenting to if we can pick who has more pain. The answer is that we can’t know. The woman with extensive endo could be in agony, or she may not have even realised her disease until she had problems falling pregnant. The woman with mild endometriosis might be doubled over in pain frequently, taking extensive time off of work or school, or she may feel very little. She often comments that the more extensive endo is a better predictor of trouble with fertility, but again, not always. Laparoscopy is not the whole story when it comes to pain, and yet pain is the symptoms that sends most of us to the doctor in the first place.

While the message of these shared stories, the cautionary tale – do not become this, press for change, press for an answer and a referral to a knowledgeable specialist- is well taken, and so important for awareness; it is the increasingly homogenous figure of “woman with endometriosis” in mainstream media that is not. Within our endometriosis community, we hear a great variety of stories, with disease of various severity and vastly different co-morbidities, because it is a space where we have firmly established our right to exist as women with endo. Within mainstream media and society as a whole, we are still trying to break through strongly engrained notions that govern discussing “women’s business”, and it’s as though it takes something spectacular to be given permission to enter the conversation. Mild endo? Well that doesn’t sound too bad, does it? Not compared to “stage IV”, “extensive and severe disease”, or “organs adhered together”. While it seems fairly harmless to focus on these depictions of big endo in mainstream media, because at least mainstream media has sat up and listened, it matters to those women with milder disease who also experience a great deal of pain. Even more importantly, it matters to those girls and women who have not yet been diagnosed, who will look to these depictions to shape their story of what is happening to them. Like the anguished heroine in my novel at fourteen, from whom I shaped my ideas of endo because there was nothing else on offer, stories of celebrities with severe endometriosis, of hysterectomies and rounds of IVF, will be the Giselle’s of the next generation. It is our duty in raising awareness to present the many faces of endometriosis, because there are indeed many.

It is our duty to ensure that girls and women understand the fundamentals of this business we call menstruation, because understanding what is normal is the first step in figuring out that something is abnormal. Furthermore, we must present the stories of women with endometriosis of all severities, of different symptoms, and different outcomes. When I was fifteen I thought that endometriosis meant pain so severe that you could barely do anything, that to have it you had to miss weeks of school, or not want to get out of bed – I didn’t do any of that, so I clearly didn’t have it, right? One of the most important and powerful questions my gynaecologist asked me during my first visit wasn’t “did you miss a lot of school?”, because I of course said no. It was when he asked me, “did you want to?” that something in me switched. I thought of all the times where I had forced myself to go to school, scared of falling behind or being seen as weak, the uni classes I had sat through, praying that I wouldn’t pass out. “Yes” I had whispered. I hadn’t realised that I could still be in excruciating pain and functioning.

Awareness to me is more than mere knowledge that endometriosis is out there, in some distant, removed void from where you live your life. I want people to realise that every day they live and breathe this disease without knowing it, that is how common it is. On a crowded train as you travel to work each morning, statistically you are likely to be surrounded by more than one woman who has endometriosis. Friends, friends of friends, family, cousins, sisters, aunts, and daughters close to you have endometriosis and may not even know it. I want people to realise that there is no way to depict what endometriosis looks like, because it looks so different on all of us. Laparoscopy is not the whole story, it is not a competition over whose internal organs are the most invaded, or how many body parts we need to resect – endometriosis is a problem no matter what form it comes in. Better detection, diagnosis and treatment is for the benefit of all women with endometriosis, and in the best interests of all of us – some are not more deserving that others. All of us matter. Pain is one of the most personal and subjective experiences we can ever have, and the marks it leaves are not always easy to see; therefore it is important that we respect these experiences and an individual’s right to speak about them if and when they choose, in whichever way they choose.

It is heartening to see the conversation about endometriosis grow, for myths to disappear and more evidence-based, consistent information take its place in the public sphere. But my goals and dreams are big (thank QENDO), and I want awareness to be more than this, to be inclusive and understanding, to listen to all voices and explore all stories. So that girls and women may recognise themselves in these stories, and seek help earlier, reducing complications and improving outcomes.

Staging is a medical term, it is communication to a doctor about which organs are involved in a disease process, it does little to tell us about our pain. I want you to listen to me carefully and remember this: you are more than a number in a chart. You are not a stage or a list of organs. You are not defined by your stage. If you should wake up from a procedure and find that there was very little endo, do not despair, it doesn't diminish what you have been through or the pain you have experienced. Should you wake and find that your endo is extensive, tangling itself across your insides in an overwhelming way, know that your story is not over - it has just begun and there is a world of options available to you. Laparoscopy is not your whole story, and at QENDO you are welcome in our sisterhood among the many different faces of endo and adeno, we are here for you.

Welcome to the sisterhood.

This post was adapted from a blog originally appearing on The Daisy Diaries, and is republished with permission here. You can read more from The Daisy Diaries here.

The materials available on or through the website [‘QENDO’] are an information source only. Information provided by QENDO does not constitute medical advice and should not be relied upon to diagnose or treat any medical condition.To the maximum extent permitted by law, all contributors of QENDO make no statement, representation, or warranty about the quality, accuracy, context, completeness, availability or suitability for any purpose of, and you should not rely on, any materials available on or through the website QENDO disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) for all expenses, losses, damages and costs you or any other person might incur for any reason including as a result of the materials available on or through this website being in any way inaccurate, out of context, incomplete, unavailable, not up to date or unsuitable for any purpose.