P
eople know deep down when something isn’t
right with their health. They just do. I was
newly 30 when my husband and I decided to
start trying for a baby, and I was nervous.
Although I didn’t vocalise it at the time, I
realised I’d been dreading this moment for as
long as I could remember. Something in my body felt wrong,
broken – despite doctor after doctor telling me otherwise.
It had been this way since my first period, which had arrived
in a toilet cubicle in Manchester’s House of Fraser when I was
just shy of my eleventh birthday. Month after month during
my teens, I lived with terrible, bone-grinding pain, awful bouts
of nausea, debilitating joint weakness and the feeling that I
might black out. Sympathetic doctors told me I was unlucky
to have dysmenorrhoea (the fancy word for painful periods)
and prescribed strong painkillers. In my twenties, the pill –
once I eventually found one that didn’t disagree with me (no
mean feat) – provided a welcome stable spell. My periods
were still something to dread, but were more manageable.
It was when I started to try to get pregnant that the
problems began in earnest. Six months went by, no pregnancy.
A year? Zilch. My husband and I had tests and were told
all was well, but 18 months on there was still no baby.
“Unexplained infertility” was our unglamorous label. All the
while, my periods – no longer chemically masked by the pill- were becoming harder to bear. I started to dread them,
each one signifying another heartbreaking month when I hadn’t
conceived. Even now, I can vividly remember where I was
when each one arrived, robbing me of hope anew and wiping
me out with pain that left me doubled-up and bedridden.
The word “endometriosis” had never been much on my
radar, though I vaguely knew it was some kind of condition
linked to periods. It was only thanks to a chance breakfast
with a dear friend – who happens to be an obstetrician, and
one of the few people I confided in about our failure to
conceive – that I properly heard the word for the first time.
Seeing me slumped in my seat, my friend asked why I
wasn’t sitting upright. I casually explained that I never could
during my period, waving away her concern despite the fact
that weeks earlier I had collapsed on a bench while on holiday
in Stockholm, weeping in agony, unable to walk.
She leaned forward and gently told me that my normal
was not normal. She explained endometriosis to me; that its
key marker was terrible pain; that tissue similar to the lining
of the womb, which should leave a woman’s body every month,
gets stuck to her organs, building up over the years; and,
crucially, that it caused major fertility issues. And she told
me that she thought I might have it. Later, I looked up the
symptoms and it was like a light bulb switching on. I ticked
so many boxes on its horrible checklist: grinding period
cramps; nausea; painful diarrhoea during menstruation; and,
the big whammy, difficulty conceiving.
As fast as I could, I booked an appointment with an excellent
doctor for a laparoscopy – a keyhole surgery used to both
diagnose and treat the condition. It is, in fact, the only way to
know for sure if you have endometriosis. I would be under for
either a few minutes or a few hours, depending on what the
doctor found and whether there was a need to operate.
I had never had surgery in my life, and my husband and
mother both voiced concerns about my haste to get to the
operating table. Yet two and a half hours later, I discovered
not only that I did have endometriosis, but that it was at
stage two of four. My bowel and bladder were coated in
endometrial cells, but thankfully not my ovaries or fallopian
tubes. If the disease had developed to stage four, I would
have been left with thick scarring across the organs I needed
to conceive. Both fallopian tubes could have been blocked,
and removal surgery would have been far trickier. Luckily,
the doctor was able to laser off the cells, which left me with
a brutal, three-month-long recovery process.
No one knows what causes endometriosis. No one knows
how to cure it or definitively treat it. No one can even say
what specific effects it has on infertility, but we know many
women with it struggle to conceive. While it was a major
relief to know I wasn’t imagining things, my overriding feeling
post-diagnosis was one of shame: shame that I, a journalist,
someone who makes a living out of getting answers, had
failed to find out I had a disease. What if my husband and
I hadn’t started trying for a baby when we did? I had failed
to push doctors to help me solve something that was blighting
my life and, as a result, I had been sleepwalking into infertility.
When my mum learned what had been ravaging my insides
for two decades, the colour drained from her face. In that
moment, I knew what she was thinking: “I had this, too, but
was never diagnosed.” She had suffered her whole life with
dreadful periods and thought that was normal; a woman’s
lot. She had one child but would have liked more. Her mother
had a similarly grim period career. She had one child – then
begged doctors for a hysterectomy.
How do we break the cycle of seeing extreme period pain
as something you must simply endure as a woman – because
“that’s nature”? Of the little we do know about endometriosis,
we know that it runs in families, it gets worse over time, it’s
common – at least one in 10 women of childbearing age in
the UK have it – and that diagnosis takes, on average, seven
and a half years. In my case, it was 20.
A groundbreaking 2018 study by Public Health England
highlighted for the first time how many women suffer some
kind of sexual dysfunction or reproductive issue without
seeking help. Of the 7,367 women researchers spoke to,
31 per cent admitted such a plight. The report painted a bleak
picture of women unable to have sex easily, coping with heavy
menstrual bleeding, incontinence and infertility, who still
aren’t going to the doctor. Stigma; fear of not being believed;
not realising the importance of solving such issues; and
crucially, like my mother, thinking suffering is simply what
is expected of our sex – all pave the path to unhappy ignorance.
The menstrual cycle is such a routine bodily process, one
that forms a rhythm to a woman’s life, but is still viewed as
“disgusting” by a society squeamish about women’s bodies.
Things are changing. Slowly. People are opening up. The
internet has allowed women to ask each other what’s normal.
Lena Dunham speaking out about her hysterectomy after years
of endometriosis was a powerful case in point – one that made
me gasp with emotion. Alexa Chung took to Instagram to
announce that she, too, was a member of the club. By 2020,
the long-overdue menstrual education programme will hit the
UK curriculum. Knowledge, as we know, is power.
In the end, I was one of the lucky ones. Because of my
diagnosis we qualified for IVF on the NHS, and were actively
prescribed it after we again failed to fall pregnant naturally
within six months of my operation (the time with the highest
odds of success). The child I didn’t ever believe would be ours
was born 18 months ago. I still can’t quite believe I am a mother.
I sincerely hope that no girl born at the same time as our
little boy will have to wait two decades for a diagnosis that
would change her life. I wish I had listened to my body
earlier, and said something instead of doing nothing. We
all need to speak up. n
Period. by Emma Barnett is out now (HQ, £12.99)How do we
stop seeing
extreme
period pain
as something
women simply
TRUNK ARCHIVE endure?151VIEWPOINT
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