I was in so much pain I’d faint — yet doctors ignored me for decades (2023)

I don’t know exactly when my symptoms started. It might have been aged 15, when I leant against the school bus stop with cramps in my abdomen. Perhaps it was when I went interrailing at 18 and on going to the loo in a French hostel discovered that it hurt to pee.

Back home, I went to see my GP — the same GP who, when my teenage sister had asked for the pill, winked at her and said, “Have fun!” He diagnosed cystitis, dipping a strip of litmus paper into a little sample pot — a test still routinely used by doctors to see if a woman has a urine infection, but one that has been proven to give the wrong result in at least a fifth of cases. I was given the antibiotic trimethoprim and, when that gave me headaches, another called nitrofurantoin.

The abdominal pain didn’t go away. No, let me rephrase that: it did go away for a few weeks and occasionally months at a time. A third drug, cephalexin, appeared to knock it on the head without side-effects. So it became my crutch. Several times a year I’d go to the GP, my urine would be dipped and I would leave clutching a prescription. Three pills a day for seven days. Until next time. Have fun!

Gradually, the pain began to get worse and the gaps between so-called cystitis infections became shorter. There was a day, in my second year at university, when I couldn’t move from my boyfriend’s bed. I lay there, legs pulled up to my chest, as I dialled the number of a taxi firm to take me to the on-campus surgery — and we never called taxis, this being the pre-Uber era, so you knew it was serious when someone did.

“You’re just unlucky,” the doctor told me. Whichever GP I saw, wherever I was, male or female, I would be asked the same questions. Do you drink alcohol? Are you sexually active? Is your underwear too tight? If I heard another woman being relentlessly quizzed like that today, I’d probably call it victim blaming.

I started to become anxious about going away, even for the weekend, in case an “attack” would leave me doubled over in pain. I would phone my GP, tearfully begging for a precautionary prescription. No, cranberry juice didn’t help. Yes, my underwear was cotton.

I began to recognise the early warning signs: dry throat, shivers, nausea. On a GP’s advice, I began to pop an antibiotic every time I felt a “twinge” and always after sex. Looking back, it seems incredible that no one thought there might be something else going on.

But when you’re told, over and over, that it’s just bad luck and that some women suffer more than others, you believe it. You put your trust in the professionals. You don’t advocate for yourself because you don’t understand that there’s anything that needs fighting for.

I’m sure this sounds like a cry for sympathy or a menstrual misery memoir. But I want to tell this story, even though it fills me with embarrassment and shame, because endometriosis affects one in ten women of reproductive age in the UK, yet takes an average of eight years to be diagnosed due to misconceptions around female pain that often see it dismissed as dysmenorrhea (period cramps) and the lack of a simple test to identify it. You probably know someone who’s suffering right now. I know that I’m constantly on the alert when my friends talk about pain, like a gynaecological hobbyist.

In both endometriosis and adenomyosis, the endometrium (the uterus lining that women shed every month) grows outside the uterus, where it shouldn’t. With endometriosis, it commonly spreads to the ovaries and fallopian tubes. With adenomyosis — the “evil little sister” of endometriosis — it grows inside the muscle wall of the uterus itself, making it swollen. This extra tissue can’t be shed during the menstrual cycle, so builds up, leading to inflammation, scarring, cysts and the reproductive organs “sticking” together.

There are many symptoms but the main ones cross over: intense period pains, pelvic pain, heavy bleeding, pain during sex, fatigue, headaches and, in severe cases, infertility. And if you have one disease, you’ve a 50 per cent chance of having the other. Not fun.

Given that this is a female epidemic, desperately little is known about either condition thanks to a woeful lack of money directed towards research. For context, endometriosis is as common as diabetes but the proportion of funding that goes towards treating diabetes is around 20 times higher. As the NHS website helpfully puts it, “The cause of endometriosis is unknown.”

Hopefully you have at least heard of it thanks to high-profile sufferers such as Woman’s Hour presenter Emma Barnett, model/presenter Alexa Chung and the late Hilary Mantel, as well as a 2020 parliamentary cross-party review that interviewed 10,000 women with endometriosis and found that 58 per cent had seen their GP more than 10 times before diagnosis. As for adenomyosis? I’ve got it and I can’t even pronounce it. Estimates suggest that anywhere between 20 and 60 per cent of women might suffer — that’s how little it’s understood.

There’s no cure either. Your options are: use a hormonal contraceptive, such as the pill or a coil; get pregnant for temporary respite; have a hysterectomy. Imagine if there were a condition that affected one in ten men and they were being told that the only way to get rid of it was to have a large and important organ removed (no sniggering at the back). It just wouldn’t wash.

That could be about to change. This autumn a trial, paid for by the Scottish government, is starting for the use of the cancer drug dichloroacetate to help relieve endometriosis pain. If successful, it would be the first non-surgical, non-hormonal treatment for the condition in 40 years. The government has also included endometriosis in its Women’s Health Strategy, published last August, saying that the “knowledge gap” around it must be closed.

But I am furious at my own lack of knowledge too. Sitting at my laptop, I just stumbled across a page on the Endometriosis UK website that revealed that “endo” and “adeno” — as these diseases are nicknamed — can masquerade as IBS. Throughout my twenties I experienced digestive problems that would have me racing to the nearest loo. Doctors blamed the salmonella I’d had at the age of 22 and I just nodded and accepted what, in hindsight, is clearly code for “dunno”.

Then there were the headaches. And fainting. I’m piecing together this painful jigsaw puzzle as I type. For years I would pass out without warning. I’d wake up on the floor. I fainted on the Tube and bus, where commuters ignored me, presuming that I was drunk, as I crawled off and phoned my parents in distress. In the pub one Christmas Eve, I suddenly couldn’t see and grabbed the back of what I thought was my boyfriend’s jumper — my fingernails digging into his skin in my panic — only to find, coming to, that I’d accidentally mauled some bloke at the bar.

I went to A&E that time, lying on a ward on which the only other patient was a man in a Santa suit accompanied by, I kid you not, another man in a Santa suit who was holding his hand. The doctor that time told me that I’d “grow out of it”. No one asked about my periods. How I wish I could step back in time and hug that girl, then demand some answers on her behalf.

Instead, that girl got comfortable with being uncomfortable. I would talk about my “normal pain” when I described how I felt to my family, even though it often drove me to distraction and made me want to kick things.

I didn’t, because I was shattered. I put it down to my demanding job on a newspaper. I had no idea that women with endometriosis are twice as likely to have chronic fatigue.

“You’re always tired,” my husband, Tim, has said on a loop in the decade since we met. As though I just needed to go to bed earlier with a Horlicks — which, given the number of times I had started to wake up in pain during the night, I actually did.

By now it was more than ten years after I’d first visited a GP in pain and asked for help. Instead, come 2am I would be lying on the bedroom floor, stifling my sobs so as not to wake Tim and kneading my abdomen with my hands — grabbing handfuls of flesh as though I could somehow pull the pain out of my body.

I could usually roll over and open the door to my bedside cabinet and shovel paracetamol tablets into my mouth. I didn’t need water, so accustomed was I to swallowing pills. Fill your mouth with saliva, pop them in, try not to gag.

It was a desperately lonely time. Reading back my WhatsApp messages from that period reveals just how much of an impact it had on my life as I cancelled plans, letting friends down again and again. Or went along only to spend evenings grimacing and wishing I was at home. There were days off work when I knew that sitting at my desk would be impossible.

In fact, it was work that finally pushed me to see a specialist. I was the women’s editor of a newspaper when endometriosis started to creep into the headlines and those famous women began to share their stories of unexplained pain and misdiagnosis. After commissioning multiple articles on this little-known disease and thinking no more of it, in pain and at my desk one day, I suddenly realised that it all sounded familiar.

I found a private consultant who put me on a roulette of very strong antibiotics, none of which made a difference. There was talk of a bladder infection, after which came more drugs. The goal never appeared to be to locate the root cause of my pain, only to manage it. When, emboldened by what I’d been reading at work, I asked, “Is it possible that I could have something like endometriosis?” he dismissed the idea out of hand.

I wasn’t, at least, given weapons-grade painkillers or antidepressants as so many women are. Though by that point, I’d have taken anything to make the pain stop.

And the truth is, I didn’t even have it that badly. Most of the time I was fine at work. I had a social life. I didn’t have to move back in with my parents, give up on my dreams or accept that I couldn’t exercise — all things I’ve heard from other women. Plus I had private healthcare, something many can’t afford and must wait to be seen, let alone diagnosed.

A few months before the pandemic, at my wits’ end, I decided to see a different specialist. There were more pills, yes, but in a targeted way that actually started to make a difference. My daily discomfort morphed into absolute agony — but agony that had a pattern. When, during a Zoom consultation during lockdown, he suggested that I see a gynaecologist who specialised in endometriosis, I cried tears of relief and frustration.

I also cried during my first appointment with my gynaecologist when she told me that what I was describing sounded like endo and prepared to scan me with an ultrasound wand, which can pick up severe cases of the disease — something no doctor had ever thought to suggest. The only other diagnostic method is a laparoscopy, keyhole surgery that looks inside the abdomen and uterus to identify endometriosis and, should anything be found, laser it off there and then. It’s basically a case of “while you’re down there”.

My ultrasound didn’t pick anything up, but nonetheless all the evidence pointed one way, my gynaecologist said. She recommended I have the op. But I hesitated. Outwardly, I declared that it wasn’t the right time to take two weeks off work. In truth, I had been conditioned into believing that it wasn’t endometriosis and I didn’t want another “nothing to see here” from a doctor. So I put it off for six months, only nervously going ahead a year ago — and coming round from the anaesthetic to hear that bittersweet diagnosis after two decades of waiting: endometriosis that had been lasered, adenomyosis about which nothing could be done, fertility that looks fine but we can never say for certain.

And that’s where stories like mine often end, with validation after years of being told there’s nothing wrong. A few days after my operation, I wrote an article saying that, “Sometimes knowing you weren’t a ‘hysterical woman’ can be healing in itself.” And it can, for a time. But we need to talk about what happens next, when the glow of “I told you so” wears off.

My initial relief gave way to anger that most of my adult life has been spent in pain, some of which I could have been spared.

What have I lost? Years in which I never felt fully able to relax. And I must be immune to most antibiotics by now. Then there’s the stuff that feels too raw even to touch: my acceptance of my own suffering, how disassociated I feel from my own body when I look in the mirror, not fighting harder to be heard, the future. Because up to half of women who have surgery will see a recurrence of endometriosis in five years, which means you’re trapped in a twilight zone between relief at having been treated and the terror that your body will let you down again (when really it’s the doctors who did). Many will discover, too late, that their fertility has been affected — when, with earlier diagnosis, they might have frozen their eggs.