Why CAN’T doctors spot condition that blights lives of so many women?
MOST women experience menstrual discomfort at times, but for 16 years Nicola Taylor, 29, had such bad periods that her life ground to a halt every month.
Painkillers and using a TENS machine (a portable nerve-stimulating device to ease pain for women in early labour) only took the edge off her agony.
She lived with the belief that she was just unluckier than most women.
‘During my period and while ovulating, I was often doubled over. It felt like someone had a knife to my abdomen and was slicing through it,’ says Nicola.
But after the birth of her daughter in 2014 the pain took a curious turn — and started affecting her shoulder each month, too. ‘It was impossible to sleep. I was in agony with my shoulder at that time of the month, too,’ she says.
And it wasn’t just pain that distressed her. She’d also experienced very heavy bleeding ever since her periods started.
‘I remember being in a science lesson and drenching my uniform,’ says Nicola, a baby yoga teacher, who lives with her husband Paul and their three-year-old daughter Elsie in Southport.
‘When the teacher asked me to come up to the blackboard, I simply shook my head as I was too terrified to move. It was mortifying.’
During her teens, Nicola’s mother took her repeatedly to the family’s GP, but each time her symptoms were dismissed as nothing out of the ordinary.
‘He told me over and over again that the pain was a normal part of growing up, and I had to get used to it,’ says Nicola. ‘I was made to feel as if I was making a fuss.’
Once, when Nicola was 15, she bled so badly her mother took her to A&E. Doctors carried out a pregnancy test, believing she was having a miscarriage, despite Nicola’s repeated insistence that she was not sexually active.
OVER
the years, she saw countless doctors and gynaecologists, who again told her there was nothing wrong.
It was only last December that it was discovered that far from making a fuss about nothing, like 1.5 million women in this country, Nicola has endometriosis.
This often intensely painful condition occurs when tissue that normally forms in the lining of the womb each month is found elsewhere. It typically develops around the pelvis, but can occur in other areas — in rare cases, it’s been found around the spine, lungs and even the brain.
And just like the lining of the womb, the endometrial tissue, fed by oestrogen, swells and bleeds each month. However, there is nowhere for this blood to go so it can cause inflammation that leads to a build-up of scar tissue that typically gets worse over time.
And each month, endometrial tissue is irritated by more bleeding and swelling.
The result is women find themselves in agony each month, not just during a period but also during ovulation, when the woman’s body is getting ready to release the egg.
But as the symptoms follow the cycle of the period, endometriosis is often mistaken as ‘just’ heavy or painful periods, says Michael Dooley, a consultant gynaecologist at King Edward VII hospital in London and a spokesman for the Royal College of Obstetricians and Gynaecologists.
Symptoms vary depending on where the tissue grows: as well as heavy painful periods it can cause pain during sex if there is tissue in the pelvis. And if it builds up around the reproductive organs, it can cause fertility issues.
If the endometriosis spreads to the bladder or bowel it can trigger pain when going to the loo.
Nicola had diaphragmatic endometriosis — a build-up of tissue around her diaphragm, the sheet of horizontal muscle dividing the chest and the abdomen — and as this has a nerve connecting to the shoulder, it was triggering referred pain there, too. At times she found the pain hard to bear.
Yet Nicola’s lengthy wait for a diagnosis is not unique.
Many women suffer for years before finding out what is wrong. A damning report by the All-Party Parliamentary Group on Women’s Health last week revealed that more than 40 per cent of the 2,600 women with endometriosis they surveyed had to visit a GP at least ten times before getting a correct diagnosis.
On average, women wait sevenand-a-half years — in 10 per cent of cases, 15 years — before being diagnosed, the report found.
Emma Cox, chief executive of Endometriosis UK, says the findings are shocking, but not surprising. ‘We hear all too often about delays in diagnosis and symptoms being ignored,’ she says.
‘ Endometriosis can be challenging to diagnose as it grows differently in every woman.
‘But doctors and nurses need to be better trained to identify it.’ Many other conditions cause similar symptoms, from irritable bowel syndrome to fibroids (benign growths in the womb).
‘Unfortunately there is no simple non-invasive test for endometriosis and no one set of symptoms that can definitely confirm the condition,’ says Mr Dooley.
The best way to diagnose it is with a laparoscopy — where a tiny camera is inserted into the pelvis via a small incision near the navel to look for endometrial tissue.
‘This tissue can be very subtle and can occasionally be missed, especially in younger women where there might not be much scarring,’ says Sanjay Vyas, a consultant gynaecologist at Southmead Hospital, Bristol and a trustee of Endometriosis UK.
Once endometriosis is diagnosed there are treatments.
The contraceptive Pill and coil are often prescribed because they help to reduce oestrogen levels, which helps stop the endometriosis growing.
However, medication alone won’t help everyone. Some may need the endometrial tissue removing by laser via a keyhole procedure, though many specialists now favour surgically cutting it away.
According to Endometriosis UK, the chances of endometriosis recurring after surgery is between 5 and 20 per cent. If this doesn’t work some women opt for a hysterectomy or an oophorectomy (removal of the ovaries). But even that is no guarantee the symptoms won’t return and about 13 per cent of women with severe endometriosis find it recurs within three years
For Nicola, just getting diagnosed was a long slog. At 19 she was referred to a gynaecologist for a laparoscopy, but it found nothing — not surprisingly, as she was so young. She was prescribed a coil, but it did little to help. ‘ The symptoms were embarrassing and unpredictable so I skipped parties and holidays. It could also make intimacy difficult as I was often in so much pain.’
The only time she was symptomfree was during her pregnancy in 2014, but within months of baby Elsie’s birth, the pain returned with a vengeance — and spread to her shoulder each month.
She took to the internet to try to find out what was wrong and discovered endometriosis could cause referred pain (felt in one part of the body, but originating elsewhere) in the shoulder.
So she went back to her GP and was referred for a pelvic scan and MRI — but neither investigation found anything.
In 2015, Nicola had yet another clear scan — but endometriosis rarely shows up on a scan.
Over the next 18 months, she tried acupuncture, physiotherapy and she even changed her contraceptive Pill twice, but nothing seemed to work.
Eventually last year, she persuaded her GP to refer her to another gynaecologist, and in December had her first laparoscopy since she was 19.
It was then, at the age of 29, that she was found to have endometriosis in her diaphragm and pelvis.
Nicola is due to have an operation in June to have it surgically cut away and is hopeful of a less painful future.
Not surprisingly, she is angry that it has taken her so long to get this far.
‘The pain at times has been completely overwhelming, but I was made to feel like a nuisance.
‘ I just hope lessons can be learned from my experience and other women won’t be so easily dismissed in the future.’