Take a Break

One in 10 women in the U.K. suffer endometriosis, but most endure an average eight year wait for diagnosis. Now, experts are calling for change.

Are you suffering in silence?

By Punteha van Terheyden

It takes nearly eight years on average for endometriosis to be diagnosed in the UK. Now, specialists are calling for it to be taken as seriously as cancer because the lifelong pain and devastation to a woman’s health can be so severe.

Endometriosis sees cells like those found in the lining of the womb grow elsewhere, causing pain, fatigue and infertility to name a few life-altering symptoms.

Over 150 million women worldwide and 1 in 10 UK 8 it, yet medical knowledge about endometriosis hasn’t advanced much in 30 years.

As the condition rarely kills women, research into less invasive tests, better treatments, a cure or understanding why it develops is not given funding priority.

Yet, the impact of the disease is far reaching, with sufferers more likely to become anxious or depressed, and more than half having suicidal thoughts - a statistic that prompted MPsto launch a review into the abysmal diagnosis delay.

Expert’s call to action

Mr CP 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. One in five will need further operations within two years. Hormone treatment often brings undesirable side-effects such as weight gain, mood swings, hot flushes, acne and hair thinning, as well as temporarily suppressing fertility.

None offer a long-term solution, with patients often encouraged by medics to have a baby, though many struggle to fall pregnant or find symptoms return after giving birth.

Eventually, women with endometriosis may choose to have a full hysterectomy. Even then, it doesn’t guarantee pain and symptoms will stop.

But getting diagnosed in the first place is an uphill battle. The disease can only be confirmed during keyhole surgery, because ultrasounds and MRIs are can often be inaccurate, meaning a sufferer can have extensive disease but have a ‘normal’ scan, often leading to years of missed diagnosis, and misdiagnosis.

It happened to Londoner Nadine Lewis, now 33. Her painful periods left her bedbound, vomiting and experiencing difficulty going to the toilet every month, from the age of 15.

She says, ‘I saw my male GP multiple times but he was dismissive, said my periods were normal and told me to go on the pill. I would be screaming and crying in pain and asked so many times, how can this be normal? How long do I have to keep suffering like this?’

Nadine took her mum to an appointment at 19, but made no progress getting a referral. It was only the following year when Nadine’s father argued with the GP that she was finally sent for tests.

‘A laparoscopy confirmed stage 4 endometriosis,’ Nadine says, ‘five years after my symptoms had first begun.’

Since then, Nadine has needed multiple surgeries as her endometriosis had already spread to her diaphragm, causing her lung to collapse or fill with fluid and blood during her periods.

‘It makes me feel like I’m drowning,’ she says. Nadine has also suffered a bowel obstruction, leading to a colostomy bag, an ectopic pregnancy and is infertile.

She says, ‘if I had been taken seriously by my GP earlier, maybe my endometriosis wouldn’t have become so aggressive, taking away my freedom, confidence, and affecting my physical and mental health.’

Nadine and her husband Guillaume, 34, have been trying to have a baby for three years, and are now preparing for their sixth IVF embryo transfer.

She adds, ‘If I had been diagnosed earlier, I could’ve been on the most appropriate medication or tried for kids sooner, and progressed further in my career. Maybe my disease wouldn’t have spread to my lungs. Early diagnosis would have made all the difference to my life.’

Mr Lim adds that whilst the majority of suffers are not disabled by endometriosis, there are some sufferers like Nadine who have a terrible time coping with the many devastating impacts of the disease.

‘Helping improve these patients’ quality of life boils down toour ability to diagnose the condition early,’ he says. ‘We need adequate funding for research to make that happen.’

A spokesperson from the Endometriosis UK, told Take a Break: ‘Delayed diagnosis can have a huge impact on all aspects of 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.’

Getting 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 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

Know the symptoms

Pain in lower tummy or back, usually worse during 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

[Sources https://www.nhs.uk/conditions/endometriosis/ and https://www.endometriosis-uk.org/endometriosis-symptoms]

• 62% of women between 16-24 don’t know what endometriosis is

• 45% of women are unable to name any symptoms

Source: Endometriosis UK

Endometriosis should be treated like a cancer