Suck it up, Darlin’ – The Endometriosis Journey

One morning in July I took a hot water bottle to my constitutional law lecture. I was early, and only a couple of other students were scattered around MCC1’s cavernous depths. But as I sat down, cradling the heat under my shirt, I heard the girls a couple of rows behind me snark to each other.

‘Everyone has period pains,’ One of them said in a stage-whisper, ‘as if it’s ever bad enough to bring a hot water bottle to class!’

This was the first day I had been out of bed that week. I’d been unable to do anything for days other than take painkillers and try not to cry. I was proud of being there, but as another wave of body rending cramps hit me despite the drugs I had taken, I nearly got up and left. In fact, by the time the break came around, I did. I was compromised and vulnerable and the girls up the back had convinced me it wasn’t worth trying today.

And what’s my problem? Can I just not cope with the normal trials of my reproductive system? Well, maybe, but for a couple of months now I’ve been making regular trips to the Woden hospital to try and work out what is going on with my body. Sure enough, I have suspected endometriosis. I say suspected, because the only way for it to be diagnosed is to have a laparoscopy (key hole surgery). Despite the fact that one in ten Australian women have endometriosis, it is a hidden illness. It isn’t just because it is internal and literally invisible, it’s hidden because it’s connected to the uterus. It’s related to, and here my voice falls to a whisper, periods.  

So what is it? Endometriosis, broadly, is when the lining of the uterus grows outside of the uterus, commonly in the pelvic region or on the surface of organs like the bladder or bowel. This can appear as lesions or scar tissue and can be so severe that it cripples the function of wherever it is stuck. I have a mild case; my symptoms are simply unusually severe period pain starting from two days before the period and lasting for longer than they should. I have heard the stories of many people suffering from endometriosis that have it far worse and more life-crippling than I do, and I want this article to be about them as well.

Now, many cis-women or other uterus owners are subject to this kind of ridicule, whether or not they have endo or even have periods. It is a perfect example of how women’s health is, and women themselves are, under-funded, misunderstood and side-lined.A 2015 article in

A 2015 article in The Atlantic told the chilling story of a woman who faced misdiagnosis, embarrassment and ultimately, the loss of one of her ovaries because a male doctor in the emergency room had failed to explore options outside of his original diagnosis, and saw this woman’s report of her own symptoms as ‘over dramatic.’ Now she didn’t have endo, but she had an ovarian torsion, and therefore similar in the sense that she reported experiencing extreme pain and it wasn’t taken into consideration.

For people living with endometriosis, this is a daily routine. There is no cure, and such, it’s all about pain management and preventing depression. My first consultation with a nurse was simply about whether I was eating healthily, exercising and keeping positive. Then I was tried on some different doses of the pill. It felt like a trial and error approach. I was even booked in for surgery this month to try something else, but I pulled out a week before. This was presented to me as ‘the next step’ and I wasn’t given the information I needed. I had not even met the gynaecologist set to perform the surgery before I had a date locked in and the countdown ticking.

This particular treatment – the insertion of a Mirena (a small contraceptive coil) into the opening of the uterus – is widely discussed among endometriosis suffers as totally hit and miss. I had been seeking support from a Facebook group and hearing these horror stories where the insertion of a Mirena did not in fact help at all, but simply caused a continuous painful period for up to a year after its installation. When I raised my concerns at an appointment I was simply told that it was ‘worth a try and it varies widely for each patient.’ For me, as a full-time student, having even three to six months of such severe side-effects would totally destroy my day to day life, and I would be forced to drop out of university for a semester. Other concerns about this treatment is the way some uteri can simply reject the device, painfully trying to push it out. An anonymous woman on the Facebook group even said she’d approached her gynaecologist to have it removed once this severe pain had begun and they told her, ‘just persevere with it for another few months, it might settle down.’ For people living in near-constant pain, it is totally unprofessional and at worst, unethical to make such comments and undergo such treatment on the basis that it’s ‘just the next available step short of laparoscopy.’

There are many kinds of invisible suffering, however, the fact that endometriosis and diseases like it are seen as ‘women’s health issues’ puts them in a dangerous and hard to access box. I am incredibly lucky to have an attentive nurse, with endometriosis herself, who advised a treatment that works, and to have a general practitioner who doesn’t trivialise my illness.

But there are many less fortunate. Especially if you’re young, outside of the recognised gender binary or financially limited, endometriosis can be a source of humiliation and stress far beyond its symptoms.

I strongly recommend everyone attends the events for endometriosis awareness this March in Canberra ­– details at endometriosisaustralia.org – and to just simply begin the conversation with your loved ones. Suffering extreme period pains or other secondary symptoms is not your cross to bear, it might be evidence of this illness. It is absolutely vital for us to talk about ‘women’s health’ and all who it affects, as well as other medical circumstances in which our pain or experiences have been trivialised.

I’m excited to change the culture around the perception of women’s experiences more broadly – but first, let me bring my hot water bottle to class you piece of shit.