One in 10 UK women has endometriosis, yet most endure ongoing pain for years, often without a proper diagnosis. Now experts are calling for change
On average it takes nearly eight years for endometriosis to be diagnosed in the UK. Now, specialists are calling for it to be taken as seriously as cancer because of the lifelong pain and devastation it can cause to women.
Endometriosis causes cells like those found in the lining of the womb to grow elsewhere, leading to pain, fatigue and infertility to name just a few symptoms.
Over 150 million women worldwide and one in 10 UK women have it, yet medical knowledge about endometriosis hasn’t advanced in 30 years — perhaps because the condition rarely kills women, research into less invasive tests, better treatments, a cure or understanding why it develops has not been given funding priority.
The impact of the disease is far-reaching, however, with sufferers more likely to become anxious or depressed, and more than half having suicidal thoughts — a statistic that prompted MPs to launch a review into the diagnosis delay.
Mr C P Lim, a leading consultant gynaecological endoscopic surgeon, says: ‘Endometriosis can be more difficult and debilitating than cancer because of the burden of choice with regards to treatment. With many cancers, you either have treatment or you die.
‘With endometriosis, you either have the treatment and suffer side-effects, or you don’t and suffer the problems of the disease.’
There is currently no cure for endometriosis, with patients typically needing surgery to relieve symptoms. Hormone treatment often brings side-effects such as weight gain, mood swings, hot flushes, acne and hair thinning, as well as temporarily suppressing fertility.
Eventually women with endometriosis may choose to have a full hysterectomy. But even that doesn’t guarantee the symptoms will stop.
Getting diagnosed in the first place is also an uphill battle for many. The disease can only be confirmed during keyhole surgery, because ultrasounds and MRIs are often inaccurate, leading to years of missed diagnosis — and misdiagnosis.
A spokesperson from Endometriosis UK told us: ‘Delayed diagnosis can have a huge impact on a woman’s life, including her physical and mental health, education, career and personal relationships. Far too often, women are dismissed for the pain they’re in, told it’s normal, or even in their head.
‘Society has normalised the common symptoms of endometriosis such as heavy or painful periods, with women often being told to just get on with it. This has to change.’
Diagnosis took five years
An earlier diagnosis would have meant a very different outcome for Nadine Lewis, 33, from London. From the age of 15, her painful periods left her bedbound and vomiting each month.
She says: ‘I saw my GP multiple times, but he said my periods were normal and told me to go on the Pill. I’d be screaming and crying in pain and asked so many times: How can this be normal?’
At 20, she was finally sent for tests and a laparoscopy confirmed severe endometriosis — five years after her symptoms had first begun.
Since then, Nadine has needed multiple operations as her endometriosis had already spread to her diaphragm, causing her lung to collapse or fill with fluid and blood during her periods. She has also suffered a bowel obstruction, an ectopic pregnancy and is now infertile.
Nadine and her husband Guillaume are now preparing for their sixth IVF embryo transfer.
She says: ‘If I’d been taken seriously earlier, maybe my endometriosis wouldn’t have become so aggressive, taking away my freedom, confidence, and affecting my physical and mental health.’
Endometriosis: the symptoms
- Pain in lower tummy or back, usually worse during your period.
- Period pain that stops you doing normal activities like work, school or socialising.
- Pain during or after sex, when pooing, peeing, during ovulation.
- Pain in your legs.
- Heavy or irregular periods.
- Fatigue.
- Trouble conceiving.
How to get a referral
- Keep a pain and symptoms diary.
- Reference the ‘NICE Guideline on Endometriosis: Treatment and Management (2017)’ which sets the baseline of care for those with endometriosis and those suspected of having it.
- Ask your GP for a referral to a BSGE specialist centre of gynaecology with a specialist interest in endometriosis.
- If your GP won’t help, ask a different one for a second opinion.
Edited by Punteha van Terheyden