The Worst Night
On living with endometriosis (originally published in Refinery29, 2017)
I’m lying in the foetal position on the floor of a public toilet, cocooned among the bleach and the paper. My hair is still wet from the bath my boyfriend scooped me from in panic.
This is my third emergency in as many weeks; my fifth year of suspecting something fundamental and poisonous is growing quietly inside me.
When I finally land in the fluorescent light of the hospital lobby — flopping like a ragdoll — I’m told that if I keep screaming it’ll take longer to be seen.
Just hours before, I was shuffling across the kitchen with dancing feet, chopping onions in time with the radio.
Pain has become a daily companion, but this time it’s different. The intensity is so removed from reality, the loss of control so absurd, I feel it in my bones: the quiet, unshakeable sense that I’m going to die tonight, right here on a toilet floor miles from home.
Frantic thoughts circle my head like a drain, and the good girl inside can’t help but laugh at the irony of being found like this; a broken thing in sick-stained pyjamas, all chip-nailed and panda-eyed.
Nanny Di always insisted that an upstanding woman ought to wear matching underwear. Should you be struck by lightning or hit by a bus on some idle Tuesday, you might as well serve the paramedics some decorum.
I think of her, then. Stand shakily to my feet and grip the basin. Think of everyone and everything. The mirror on the wall sways.
I don’t know who the woman staring back at me is, but I know she isn’t ready. She hasn’t said everything she needed to say. She isn’t matching.
Soon, in the quiet din of a side room, an answer emerges.
I’m not dying. It’s just that an ovarian cyst has ruptured, sending agony tap-dancing along every synapse, tricking the brain into thinking I could.
The signs were there, of course. In the weeks preceding The Worst Night, I’d cried at a public bus stop. Sunk to the floor of the tube. Taken several nauseating Ubers to hospital, reassuring concerned drivers I wouldn’t chuck up on the seat.
It’s not that I was being reckless in ignoring them. It’s more I’d been told I was fine so many times I’d started to believe it.
For years, I’d shared my body with a phantom, lost one week out of four, spent more nights in the bathtub than the bed, clutching myself quiet.
Along the way, I was told I had irritable bowel syndrome, urinary tract infections, cystitis, food allergies, coeliac disease, anxiety.
So I swallowed my pain, pretended it wasn’t there, splashed water on my face, breathed deeper. In and out, until I couldn’t.
This is what endometriosis looks like, some of the time. Most of the time, it looks like nothing at all. An invisible burden shared by 176 million women, it manifests as a succession of small robberies and lost things — an accumulation of cancelled plans, sick days, spare heat pads stuffed into office drawers, elephants in rooms.
It’s insidious, and always seems to strike when you least expect it — forcing you to look ahead before your time, taunting you with codeine dreams of the children you didn’t know you wanted until the prospect of them grew slippery and unsure.
The problem is simple in theory; difficult to manage in practice. The best analogy, perhaps, would be to say it’s the result of tissue growing in the wrong places, like weeds in a garden.
Endometrial tissue is supposed to be confined to the womb and shed each month during the menstrual cycle. In endo sufferers, the tissue sticks around and invades other areas of the body for reasons we don’t yet understand. Attaching to organs like gum, it continues to inflame as if preparing to exit the body, with nowhere for the blood to go.
The resulting effect is a maelstrom of inflammation, pain, digestive problems, an increased risk of infertility, the kind of fatigue that can bleed into depression if you let it. Thankfully, it’s not a fatal condition, but the pain is oft described as comparable to childbirth — a final twist of the knife for those who want children, but rendered unable to carry them.
It’s staggeringly common; even more staggeringly under-researched. Here is an epidemic that affects 1 in 10 women of reproductive age. An epidemic comparable, statistically, to diabetes — and yet, most of us don’t know how to pronounce its name. Complex, unpredictable, stubborn — we still haven’t managed to develop a cure beyond basic Band-Aids and cover-ups, and few specialists are equipped to deal with relentless returning symptoms.
How did we get here? Much of the problem lies in the path to initial diagnosis. Endometriosis can only be officially detected by laparoscopy. With our NHS so tightly squeezed, it’s unsurprising chronic conditions are taking a back seat over those that are immediately life-threatening or simpler to treat — though this provides little consolation to those struggling.
Another issue is the deeply ingrained notion that painful periods are to be expected and endured, as well as the subjective nature of chronic pain itself. How do you prove the impact the condition is having on your life? How do you argue against “normal” test results? These are just some of the problems that keep the condition shrouded in darkness.
I’m not alone, and my journey towards diagnosis is far from unique.
High on morphine and disbelief, I sat cross-legged in the hospital for the weeks that surrounded the first Worst Night, whispering into the dark with women 20 years my senior.
Gynaecology wards — like all wards, I suppose — are great equalisers; stripping you of ego and confronting you with both your own fragility and power. They’re also strangely mystical places, full of untapped wisdom, collective grief and hilarity, which you’ll only find if you actively tap in.
On the ward, I met a teenager who couldn’t stand on account of her pain, and came to understand what true love looks like in the faces of her family, who’d pace the floors daily. A female prisoner, chained to the bed, with a penchant for flirting. A woman who worked as a senior financial executive before the disease snatched all she had worked for from her grasp. Standing in line at Pret with a bunch of male colleagues, she told me she’d felt an agonising, pulling sensation, then passed a clot the size of a golf ball right there among the sandwiches and the juice.
She was referred for an emergency hysterectomy to be performed the day after I was discharged, and I felt my stomach drop as she told me she felt wicked for not being sorry or sure, scared the finality would haunt her.
She blossomed from acquaintance to ally overnight and I think of her often, her spectre manifesting itself in supermarket queues and crowded carriages. I don’t remember her name, but I hope she knows that she’s strong and brilliant and that none of this is her fault.
If this were a disease that solely affected men, I don’t believe we’d be facing such uncertainty and delay. Not for one minute.
No matter how understanding some individual doctors have been, and no matter how much I adore the NHS with every fibre of my being, my condition remains part of a tapestry woven with centuries of oppression, a crisis thriving in silence and denial. Realising this has been a bitter pill to swallow, but has also helped me unearth the systemic poison at the root.
Because this is not just about tissue misbehaving. This is about shame.
The more I’ve learnt about the long and sad history of this invisible illness, the more my heart has burst into flames, fuelled by the lineage of women who came before, all of them battling with a legitimate, fire-dampening pain that was never validated — perhaps never even spoken out loud.
Sometimes, late at night, I live out their lives in my head. I dream of unsanitary hospitals and experiments conducted on black and brown bodies — of the silent sufferers rarely credited for their contribution to modern gynaecology. I dream of unnecessary hysterectomies, hysteria and shock treatments. Of the women who continue to soldier on today without any access to safe healthcare. Many of them were no doubt broken by their infertility in a time and place where childbearing was one’s only currency. Many of them may be enduring painful sex as I type this, or quietly questioning their own sanity in the face of disbelieving physicians.
In the liminal space I find myself in between sleeping and waking, I see them rise from the ashes, directing us to keep on keeping on. Then I get up.
Because despite the pain and suffering, this illness has certainly made me a stronger woman and a more compassionate human. The clichés about gratitude and misfortune are true, and this illness has been a gift as well as a burden. It’s broken down barriers, illuminated what’s important, forged bonds that can’t be broken, and forced me to acknowledge my privilege as well as my disadvantage. It’s taught me who I am, and made me fall in love with my own strength.
If you think you may be suffering, if you feel ignored, if you feel angry on behalf of others — now’s the time. Kick and scream. Demand answers. Fight like it is someone else’s battle. Because we owe it to ourselves, to those who came before, and to those who are yet to run.
Signs to watch out for
Pain
Painful periods
Pain on ovulation
Pain during internal examinations
Pain during or after sex
Pelvic/abdominal pain
Bleeding
Heavy periods, with or without clots
Prolonged bleeding
“Spotting” or bleeding between periods
Irregular periods
Loss of “old” or dark blood at the start of a period
Bowel and bladder symptoms
Bloating
Bleeding from the bowel
Pain passing urine
Other symptoms
Fatigue
Depression
Back pain
Leg pain
Things that have helped me deal with my own symptoms
The support of other women
The support of Endometriosis UK
The Mirena IUD
Beautiful, soulful nurses
The hospital tea-trolley lady
Patient junior doctors
CBT
Knowing Thy Enemy
Hot water bottles and scorching baths
Being persistent and sure
Calling home more
Creating more
Moving more
Loving more
