Entries open for Honi Soit 2021 Writing Competition

Being diagnosed with endometriosis

On gendered experiences of healthcare.

Art by Ellie Stephenson.

At the beginning of 2021, I am prescribed an IUD to manage my diabolical period pain. I opt to get it inserted at my GP, with minimal pain relief. I am brave, I decide. I’m stoic. I’ve endured enough pain and enough contraception that I have nothing to worry about. 

It turns out this is a mistake — they don’t even get the Mirena box open, because as soon as they touch my cervix, I am teary. No amount of discipline or stoicism can break through the blind pain which scrunches me up and knocks the air out of me. I can’t even stop my thigh from shaking. 

I get a referral to an OB-GYN. “We have better equipment”, he tells me, “but let me know if the pain is too much”. It is too much. Once again my legs shake helplessly on the stirrups and my abdomen is wracked with contractions. The IUD remains in its box. I sniffle, feeling pathetic. 

The OB-GYN sits me down. “Ellie,” he says solemnly, “I think you have endometriosis. Your cervix is at an angle and your uterus is retroverted. I think it’s because the endometriosis has created scar tissue, which has pushed the cervix around. Are your periods bad?”  

I sob, all nine years of menstrual torture running through my head: the first cramps hitting in the summer between years six and seven, the missed days of school and work, the brain fog, the ineffectual Panadols and Nurofens, the series of unhelpful hormonal contraceptives. 

I get home and I sob more. Partly because of the excruciating pain of having my cervix prodded. Partly because of the indignity of sitting, legs open and shaking, with the slimy speculum inside me. But mostly because I have endured 9 years of chronic pain now and all it took to work out what was wrong was a specialist taking a look at my cervix. I’m furious.

The fury grows as I read the pamphlets on endometriosis the doctor has given me. The symptoms line up: the period pain, of course, but also the nausea, the faintness, the diarrhea, the aches in my lower back and upper thighs, the stabbing pain in my ovaries when I ovulate. 

When I asked my doctor about endometriosis, aged 15 or so, she told me not to worry — it was just primary dysmenorrhea, regular old period pain. Apparently, menstruation had just arrived to me as a cursed package deal with a whole lot of suffering thrown in. 

I book a laparoscopy. The surgery involves probing around your abdomen via a keyhole incision in the navel. If they find endometriosis, they excise it. 

The night before the laparoscopy, I am subdued. The idea of surgery is scary, but the question that I really can’t get out of my head is: what if they don’t find endometriosis? What if I’ve paid thousands of dollars for a surgery which doesn’t find anything? What if I’ve been exaggerating my pain the whole time? 

I know, rationally, that these questions are nonsense. A laparoscopy is a diagnostic procedure, I remind myself, and endometriosis rarely shows up on ultrasounds. A laparoscopy is the only real way to be sure. But all the same, years of being told that the pain is normal have got to me; I can’t help feeling like maybe I am just overreacting, like maybe it’s all in my head. 

I have to arrive at the hospital at 5:30am. I change into the hospital gown and do a pregnancy test. They wheel me into the operating theatre. The anesthetist checks my name, date of birth, and whether I have any allergies. My consciousness lapses, and I wake up several hours later to the news that I was a massive pain to intubate, and that I have endometriosis. I feel relieved, sleepy, and in pain. 

In the fortnight it is taking me to recover from the surgery, in between opioid-addled dreams, I mull over the experience. 

My prevailing emotion is shock. The whole process is so surreal. To go from years of unexplained chronic pain, to a diagnosis, to treatment in a matter of weeks is absurd. I grapple with what it will be like once the surgical scars heal. I’m scared: Now that less of my brain will be wasted on coping with pain, I worry I’ll be disappointed in myself, that I won’t be that much more functional or productive. To have spent so much time withstanding pain, and now to suffer less, is uncanny. 

I am also intensely conscious of my privilege in having had a laparoscopy at all. Accessing specialists, getting tests and consultations, paying for the anesthetist and the hospital and the surgeon are all immensely expensive. There is really no way I could have afforded it without help from my parents and if I had been living out of home. Even beyond the upfront cost, spending two weeks off from university and work is a sizable expense in time, study and lost income. 

The expense of the surgery is complicated by my lingering sense of its frivolity. Although it has now been proved undoubtedly necessary, nearly a decade of doctors downplaying my pain has its impacts. 

As I think through my experiences with doctors, The overwhelming observation is the unseriousness with which my doctors approached my pain. Despite its significant effects on my life, they had no interest in determining its source: their treatments were either wholly ineffective or required me to skip my periods indefinitely. At no point was the pain treated like a serious, chronic issue which was negatively affecting my quality of life. This is regrettable because the pain was nowhere near normal — in the months before the laparoscopy, I was nearly always in some form of pain, a twinging near my ovaries or a cramping in my lower back simply a fixture of my body.

The part of my experience which does not sit easily with popular narratives about ‘women’s health’ is that the gender of my doctors was totally irrelevant to the quality of the treatment I received. An assortment of women GPs ignored my symptoms and it was a male OB-GYN who finally diagnosed me. Despite what representation politics would have me believe, having a doctor who looked like me or had the same organs as me was immaterial. I can’t help but be pessimistic about the prospects of tokenism (at worst) or representation (at best) for improving medical care for non cis men. 

In my pessimism, I remember all of the appointments where I would prepare questions in my head beforehand, telling myself I would get answers at last. When the time came to actually ask the questions, the doctors would simply brush them off. They’d tell me I didn’t have anything to worry about and we simply needed to try another medication. When I asked apologetically whether it might be worth at least getting an ultrasound, I felt like a nuisance. A crazy, hypochondriac nuisance. When things went wrong, like when my Implanon stopped working, I’d wait months before returning to the doctor, preferring to wait and hope instead of bothering them again. 

It’s clear to me that the barriers to proper healthcare are systematic ones. Most obviously, the lack of investment in research and the unwillingness to seriously address chronic pain mean that primary health carers lack the requisite knowledge to help their patients. Underpinning this, the power imbalances between doctors and patients make it difficult for people with pain, illness and disabilities to be acknowledged. This is largely not an individual fault (although individual doctors must do better) but shapes the way that patients are viewed and whether we are listened to. 

The feeling that you are overreacting, the fear that you are a hypochondriac, the sense that you’re being annoying by persisting in seeking care: these are the symptoms of a medical system which tells us we cannot trust our bodies and we must simply tolerate debilitating pain. At the nexus of an underfunded and inaccessible health system, ingrained ableism, and flimsy investment in women’s health, getting reproductive healthcare is a struggle.