My Endometriosis & What Turned Into The Very Worst Night

I am lying in a foetal position on the floor of a public toilet, cocooned among the bleach and the paper. My hair is wet from the bath my partner scooped me from in panic, and my socks aren’t matching. The ambulance didn’t come, and when I arrive the receptionist warns that if I keep screaming it will take longer to be seen. This is my third visit to A&E in as many weeks, my fifth year of feeling like there is something fundamental and poisonous growing quietly inside me. I am exhausted and desperate, so I keep screaming. Claw at the cubicle door. Bite my own hands. Retch.

Just hours before, I was shuffling around the kitchen with dancing feet, chopping onions in time with the radio, laughing obliviously with my head thrown back. I’ve grown tolerant of daily pain, but this is different. The intensity is so removed from any semblance of reality, the loss of control so absurd, I feel it in my bones: the unshakeable feeling that this is the night I will die, perhaps here, on a toilet floor miles from home. Frantic thoughts circle my head like a drain, and the perfectionist inside cannot help but laugh at the irony of them finding me like this – all chipped nails and panda eyes, a broken thing in sick-stained pyjamas. I do not recognise the person in the mirror, but I know she is not ready, that it is not time.

It turns out that it isn’t time. It’s just that an ovarian cyst has ruptured, sending agony tap-dancing along every synapse, tricking the brain into thinking that the end is imminent. The signs were there, of course. In the weeks preceding The Worst Night, I had cried at a public bus stop, taken several nauseating Ubers to hospital, reassuring concerned drivers that I wouldn’t chuck up on the seat. Each trip was fruitless and I remember little, except blurred ceilings, perplexing blood tests that denied anything was wrong, the comfort of hunching into dark stairways, sinking into baths.

It’s not that I was being reckless in ignoring the signs. It’s more that I’d been told I was fine so many times I’d started to believe it. For years now, I had shared my body with a phantom, lost one week out of four, spent nights curled up in the tub almost as often as the bed, clutching myself quiet while my partner slept alone. I was told I had irritable bowel syndrome, urinary tract infections, cystitis, food allergies, coeliac disease. One doctor was convinced it was anxiety manifesting in physical pain, as if hypochondria were compelling me to bend myself in half. And 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 stashed in office drawers, elephants in rooms. It is insidious, and always seems to strike when you least expect it – forcing you to look ahead before you’re ready, 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, but 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, to be shed each month during the healthy menstrual cycle. In endometriosis sufferers, the tissue sticks around for far longer than it’s welcome, and invades other areas of the body for reasons we do not yet understand. Attaching to organs like gum, it continues to inflame as if preparing to exit the body, but there is nowhere for the blood to go. The resulting effect is a maelstrom of inflammation, pain, digestive problems, an increased risk of infertility, and the kind of chronic fatigue that can bleed into depression if you let it. Thankfully, it’s not a fatal condition, but the searing pain it causes is often described as being comparable to childbirth – a final twist of the knife for women who want children, but are often rendered unable to carry them.

As I have grown alongside this, grown despite it, tectonic plates have smashed at my feet. I am not the same person I was a year ago, and I’ve stopped seeing endometriosis as a personal cross to bear and started tackling it like the societal disease it is – digging for roots beneath the mud, reading medical papers by torchlight, unearthing the forces that keep many quiet, outstretching my hands towards other women who share the burden.

After all, this is not some rare, exotic disease. It is staggeringly common, and even more staggeringly under-researched. Here is an epidemic that affects 1 in 10 women of reproductive age. Here is an epidemic that is comparable, statistically, to diabetes – and yet, most of us do not even 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 the relentlessness of 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 – an invasive and costly procedure involving anaesthetic and deep wounds and long periods of recovery. When our NHS is tightly squeezed, it’s unsurprising that the thorniest and most frustrating conditions are taking a back seat over those that are either immediately life-threatening or simpler to treat – though this provides little consolation to women who are struggling. Another issue is the deeply ingrained notion that painful periods are the norm, as well as the subjective nature of chronic pain as a whole. How do you prove your pain? How do you argue against “normal” test results and scans? How do you push for a procedure rarely performed, knowing that it’s a mere diagnostic tool rather than a solution? These are just some of the problems that keep the condition shrouded in darkness.

I am not alone, and my journey towards diagnosis is far from the most traumatic or frustrating I’ve come across. When I was admitted to hospital, I was reborn in 48 hours. High on morphine and disbelief, I sat cross-legged, whispering late into the night with women 20 years my senior, bearing witness to the injustice they suffered. I met one woman who worked as a senior financial executive, before the disease snatched all she had worked for from her grasp. Her own Worst Night was unspeakably terrible. Standing in line at Pret with a bunch of male colleagues, she felt an agonising, pulling sensation, and 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. I felt my stomach drop as she told me she felt wicked for not being sorry or sure, felt rushed, felt scared the finality would haunt her. She blossomed from acquaintance to ally overnight and I think of her often, see her manifest in supermarket queues and crowded carriages. I don’t remember her name, but I hope she knows that she is strong and brilliant, and that none of this is her fault.

If this were a disease that solely affected men, I do not believe we’d be facing such uncertainty and delay. Not for one minute. And no matter how understanding some individual doctors have been, and no matter how much I adore and appreciate the NHS with every fibre of my being, the fact remains that my condition is 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 it has also helped me understand the systemic poison at the root.

Because this is not just about tissue misbehaving, this is about shame. And because the more I have 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 have been 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 non-consensual experiments conducted on black bodies – of the silent sufferers rarely credited for their contribution to modern gynaecology. I dream of asylums, unnecessary hysterectomies, hysteria and shock treatments. I dream of the women who continue to soldier on today without any access to safe healthcare, watch them spiral one by one, a never-ending string of paper warriors. 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, or developing a dangerous reliance on opiates in the absence of a sustainable, longer-term solution.

Once I’ve dried my eyes, I see them rise from the ashes, see how far we have come, and how far we have to go. Then I get up. Because despite the pain and suffering, this illness has certainly made me a better feminist, a better ally, a better human. The clichés about gratitude and misfortune are true, and this illness has been a gift as well as a burden. It has broken down barriers, illuminated the important things, rid me of menial worries, created bonds that cannot be broken, forced me to acknowledge my privilege as well as my disadvantage. It has taught me who I am, and made me fall in love with my own strength.

If you think you may be suffering, or if you feel ignored, or if you feel angry on behalf of others – now is 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, to those who are yet to run.

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
Painful bowel movements
Bleeding from the bowel
Symptoms of Irritable Bowel Syndrome (diarrhoea, constipation, bloating – particularly during your period)
Pain when passing urine
Pain before or after passing urine or opening your bowel

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
Keeping a gratitude journal
Ru Paul reruns
Audre Lorde quotes
Hypnosis videos
Calling home more
Creating more
Moving more
Loving more