Health

Endometriosis: one woman’s story

It affects an estimated 176 million women worldwide, yet can take years to be diagnosed. Terri White, author, journalist and Editor in Chief of Empire magazine, shares her story – plus advice on how to get listened to
Cassi Josh, Ed Leszczynskl and Jr Korpa, all Unsplash

‘As women, we know pain intimately. The language and grammar; how it sits on our tongue. We become familiar with it before we’re actually women. When we’re still girls; still trying to know the outline of the bodies that we’re growing into. The pain first arrived inside me when I was 10 – the afternoon I started my period, while at my nana’s house for Sunday dinner. I’d had a gnawing, clawing pain within me since that morning – one that gathered force in my thighs and blew across my middle like a hurricane.

I still remember the sight of the full branches of the trees against the winter sky behind the house as I walked into the toilet. Pulling down my pants, I saw the wide swipe of vivid red, then the drip-drip-splash of blood filling the bowl. My first reaction was panic; my second, confusion. Was I dying? After a few questions fired at my nana, it was official: I was somehow already leaving girlhood behind. I was becoming a woman. I had my period.

Since that day, being a woman has always, for me, been associated with pain. As a girl, my brick-like sanitary towel (because I was terrified of tampons) was always drenched in blood. Once a month, every month, like clockwork, I’d wake up (often I’d be woken up) with pain radiating through my legs and bouncing off each rib, making my teeth vibrate and ache. When I spoke up, to my mum, I was told that was just what it was to be a woman. That was life.

Eventually, when the pain became unbearable, I saw my GP, who’d looked after the health of our family for years. ‘‘How much blood?’’ he asked. “Um, loads,’’ I said, unsure of how I could possibly measure it. ‘‘You can lose up to a tablespoon a day,’’ he said. ‘‘It’s normal. You’ll get used to it.’’ I sat before him, aged 12, imagining my cereal spoon filled with blood, convincing myself that he was right – even when I knew he was wrong. This couldn’t possibly be what it felt like to be a woman. I couldn’t be expected to endure this every month for the rest of my fertile life. But the quiet man with the grey beard and glasses convinced me. I learned to live, to bleed, quietly.

Terri White Editor of Empire Magazine

‘This couldn’t possibly be what it felt like to be a woman. I couldn’t be expected to endure this every month for the rest of my fertile life’

Each month was nothing short of a battlefield in my pants. I bled through ‘‘super’’ tampons within an hour. Clots smeared my thighs. Then, when I became a woman in other ways and started having sex, new pain emerged. Pain that would kick the breath out of me. Maybe, said the doctor, it was cystitis (it wasn’t). Maybe I had a too-small cervix (I didn’t).

By my late teens and early twenties, I’d become grimly used to the pain, until I suddenly refused to take it. Each month now felt worse than the last. I cried when I had sex with my boyfriend. I cried during my period. I was now 23 and working as a journalist. I also had a new friend: Google. I entered my symptoms and the results pinged: ‘‘endometriosis’’, the chronic condition where tissue similar to the lining of the womb grows elsewhere in the body.

I visited my GP, who explained that many women think they have endometriosis when they don’t (in fact, it’s thought 1 in 10 women of reproductive age suffers from the condition). That diagnosing it was very hard (which is presumably why it takes an average of 7½ years to get a diagnosis). And that there was a dense list of things we’d have to rule out first. I had urine tests and blood tests, though I was never sure what they were testing for. I went to appointment after appointment, over several months, never getting any closer to a diagnosis. The closest I got was a recommendation: that if my periods really were that painful, I could just take the Pill continuously. It felt like surrender and survival, not treatment.

I started to worry that I was imagining it. That really, this was how all women felt. That somehow, I was ‘‘weak’’ for not being able to take it like they did. I almost fell for that narrative: the one that declares women to be fantasists when it comes to their own health – not to be believed.

Shadow of woman in pain on red background, endometriosis

I hit my wall after yet another fruitless doctor’s appointment: one in which I requested – and was refused – a laparoscopy [keyhole surgery that uses a small camera to look inside the abdomen]. As I stood on the pavement outside, in tears of frustration and rage, I decided I’d had enough. I’d do whatever it took. At my desk the next day, I Googled “private endometriosis doctor’’. I had a consultation within 24 hours; a session that lasted a whole hour. I was examined and, for the first time, really listened to. This time when I cried, it was with shock and grateful relief, at the words I thought I’d never actually hear: “Yes, I think you probably do have endometriosis. We’ll do a laparoscopy and take a look.’’ I was booked in for the procedure within the week.

The day I checked in, at a small private hospital with white and green walls and starched sheets, I felt safe. I knew that by the time I walked out of the building, I would – after 13 years – finally have an answer. When I came round, the doctor told me that I had “moderate’’ endometriosis. That they’d taken away the scar tissue with lasers. That I might not be able to have kids; that, certainly, it would be tougher.

‘I knew that by the time I walked out of the building, I would – after 13 years – finally have an answer’

At the time, I said I didn’t care. I was relieved that my pain had finally been recognised and dealt with. And for a few years, it largely went away. As my thirties came and went, I figured that any pregnancy window I did have was closed. But against all of the odds, my body quietly rebelled. Unbeknown to me, the day I turned 40, I was already pregnant. Unplanned, but as it turned out, so very wanted.

My pregnancy ended up being a sweet, sweet escape. It was the longest period without a period – and pain – I’d ever had. The peace, and relief, was palpable. When I stopped breastfeeding my son, I knew that I would be inviting the pain back in again. Which I have. I’m back on the Pill, which I’m told can help. And I’m considering taking it full-time again, so I can simply keep the pain away.

That’s it. There’s no happy ending. Yet I feel indescribably lucky – that I’m not infertile, and that I have a son. Now, at 41, I know pain more intimately than I ever have done. It’s become stitched into the fabric of my life. But for now, the storm has quietened.

What is endometriosis?

It’s when tissue that’s similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.

Symptoms can include:

• Pain in your lower tummy/back; often worse when menstruating
• Debilitating period pain; heavy periods
• Pain during/after sex
• Pain when peeing/pooing during your period
• Nausea, constipation, diarrhoea, blood in your urine during your period
• Difficulty getting pregnant

What to do if you’re not listened to, by Endometriosis UK

Keep a diary:

Include how long symptoms have been going on for, and how they’re affecting your day-to-day life, so you can show this to your GP. (See endometriosis-uk.org for a helpful guide.)

Refer to the official guidelines:

The NICE guidance, Endometriosis: Diagnosis and Management (2017), sets out a standard for how GP care should be provided for those with suspected endometriosis. NICE states that anyone with one or more of the common symptoms should be referred to secondary care (see below). You can mention these guidelines to your doctor and ask that they are followed.

Ask for a referral:

Request a referral to a gynaecologist with a special interest in endometriosis. If you have confirmed or suspected endometriosis in your bowel, bladder or ureter, you can also be referred to a specialist centre, run by the British Society for Gynaecological Endoscopy (BSGE). Find out more at bsge.org.uk.

You can also ask for a second opinion, or to see a different doctor.’

Check out Terri on Instagram.

To find out more about your periods, click here.