Yet this is what happens year after year to women with endometriosis.
asserted
what → happen → endometriosis
They go to their GP describing periods so agonising they end up curled up on the bathroom floor, and they’re sent away with painkillers and the distinct impression that they are making a fuss.
asserted
they → go → fuss
A report this year by the charity Endometriosis UK found that 82 per cent of women with the condition had been told by a healthcare professional they were making a big deal about nothing, or had the severity of their symptoms doubted.
asserted
severity → find → symptoms
The average time from seeing a GP to getting a diagnosis is nine years and four months, up from eight years in 2020.
asserted
time → see → 2020
Endometriosis affects 1.5 million in the UK and occurs when tissue similar to the lining of the womb grows elsewhere, typically on the ovaries, fallopian tubes, bladder and bowel where it causes inflammation, scarring and pain.
asserted
it → affect → inflammation
Treatment usually starts with painkillers and hormonal treatments such as the contraceptive pill or a hormonal coil, which can dampen symptoms but don’t work for everyone.
asserted
which → start → everyone
If those fail, women may be offered hormone injections that put the body into a temporary, artificial menopause, or keyhole surgery, called a laparoscopy, to cut or burn away patches of tissue.
uncertain
that → fail → tissue
Surgery can bring months or even years of relief but doesn’t remove the underlying tendency for the tissue to grow.
asserted
tissue → bring → tendency
Studies suggest symptoms return in up to half of women within five years, so many have operation after operation.
asserted
many → suggest → operation
As a psychiatrist, I’m acutely aware of what this does to the mind.
asserted
this → ’m → mind
Chronic pain and depression feed off one another, each making the other worse, and when the BBC surveyed more than 13,500 women with endometriosis, half said they’d experienced suicidal thoughts.
asserted
they → feed → thoughts
Endometriosis affects 1.5million women in the UK and occurs when tissue similar to the lining of the womb grows elsewhere, typically on the ovaries, fallopian tubes, bladder and bowel where it causes inflammation, scarring and pain
Careers stall, relationships buckle under the strain and as a result of painful sex, and friendships wither because it’s easier to stay at home than explain, again, why you can’t come out.
But what I find most corrosive is the disbelief.
asserted
find → affect → what
When you’re repeatedly told nothing is wrong, you start to doubt your perceptions.
asserted
you → tell → perceptions
Women begin to wonder if they’re weak or it’s all in their head.
asserted
it → begin → head
Some end up being treated for anxiety or depression while the physical cause goes unnoticed.
asserted
cause → end → anxiety
And when – or if – a diagnosis does finally come, the relief is often mixed with grief and anger for all the lost years.
asserted
relief → come → years
Endometriosis is also a leading cause of fertility problems but the usual first treatment, hormonal contraception, can’t be used while trying for a baby.
asserted
treatment → lead → baby
Some women, worn down by years of pain, opt for a hysterectomy in their 30s, ending any chance of carrying a child.
asserted
women → wear → child
Many don’t realise that removing the womb doesn’t necessarily cure endometriosis because the disease can grow outside it.
asserted
disease → realise → it
All of this is why news is so welcome that prescriptions of two newer tablets, used for endometriosis and fibroids, have tripled.
asserted
prescriptions → use → endometriosis
Relugolix combination therapy, sold as Ryeqo, and linzagolix, sold as Yselty, were recommended by watchdog NICE last year for women whose endometriosis has not responded to medical or surgical treatment.
asserted
endometriosis → sell → treatment
These drugs block the signals from the brain that drive the body’s production of oestrogen, which fuels endometriosis.
asserted
which → block → endometriosis
Patients are given them alongside a low dose of hormones to protect against menopausal symptoms such as hot flushes and bone thinning.
asserted
Patients → give → flushes
NICE says more than 12,000 in England were prescribed these drugs in the year to March, almost three times the 4,100 the year before.
asserted
12,000 → say → March
One woman, who started the tablets while waiting for a hysterectomy, told NICE that, where the pain used to put her in bed, she can now go to work.
asserted
she → start → work
They aren’t a cure, can cause hot flushes and headaches, women will need bone density monitored, and they can’t be taken while trying to conceive.
asserted
they → cause → flushes
But their effect is reversible, so if you stop taking them it is possible to get pregnant.
asserted
it → stop → them
A woman in her 30s no longer has to choose between a lifetime of pain and giving up on a family.
asserted
woman → have → family
So how do you get taken seriously?
asserted
you → take → ?
Record when the pain strikes, how bad it is, any bowel or bladder symptoms, pain during sex and days missed from work or plans cancelled.
asserted
it → record → work
A written record is far harder to dismiss than a vague account in a rushed appointment.
asserted
record → write → appointment
Ask directly: ‘Could this be endometriosis?’
uncertain
this → ask → ?
Mention if your mother has it, as it runs in families.
asserted
it → mention → families
NICE says GPs should offer a transvaginal ultrasound to all with suspected endometriosis, even if a physical examination is normal, so ask for one.
asserted
examination → say → one
But remember a normal ultrasound doesn’t rule it out as smaller patches often don’t show up.
asserted
patches → remember → it
If painkillers and hormonal treatment haven’t helped, or your symptoms affect daily life, NICE says you should be referred to a gynaecology service.
asserted
you → help → service
Ask for that referral and for it to be noted in your records.
asserted
it → ask → records
If you’ve tried other treatments or had surgery, ask the gynaecologist if relugolix combination therapy or linzagolix might be suitable, as these are usually first prescribed by specialists.
uncertain
these → try → specialists
If you’re still not heard, ask to see a different GP.
asserted
you → hear → GP
You know your body better than anyone and you deserve to be believed.
asserted
you → know → anyone
…and 17 more, not listed.
The Aporia
