Experts are calling for agonising endometriosis to be taken as seriously as cancer. We speak to experts and a sufferer about the devastation it brings

Exclusive | 3 min read | Endometriosis Awareness Month

The NHS recently named endometriosis one of the top 20 most painful conditions to live with. And yet, it takes nearly eight years on average for the disease to be diagnosed in the UK. Worldwide, the stats are not much better.

Now, specialists are calling for endometriosis to be taken as seriously as cancer because the lifelong pain and devastation to a sufferer’s health can be so severe.

Endometriosis is when cells similar, but not the same as those found in the lining of the womb grow elsewhere in the body, causing pain, fatigue, painful periods, nausea and infertility to name a few life-altering symptoms.

Over 176 million women and people who menstruate have endometriosis worldwide - 1 in 10 in the UK (a similar number to those suffering diabetes) - 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 often given funding priority, though there are pockets of amazing research going on.

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 MPs to launch a review into the abysmal diagnosis delay.

THE PREVALENCE OF ENDOMETRIOSIS IN WOMEN WITH INFERTILITY BE AS HIGH AS TO 30–50%

ENDOMETRIOSIS IS THE SECOND MOST COMMON GYNAECOLOGICAL CONDITION IN THE UK

SOURCE: ENDOMETRIOSIS UK

Mr CP Lim, a leading consultant gynaecological endoscopic surgeon who trains other surgeons in the gold standard of excision surgery 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 laser away or cut out disease. One in five will need further operations within two years. This writer, and founder of Lacuna Voices, has had six surgeries for it, including the removal of one ovary at just 32.

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 months after giving birth. 

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

45% of women are unable to name any symptoms

ENDOMETRIOSIS COSTS THE UK ECONOMY £8.2 BILLION A YEAR

Source: Endometriosis UK

Many also suffer endometriosis pain during pregnancy as their adhesions - thick, fibrous bands caused by the endometriosis - are stretched, or organs such as the ovaries, which are stuck by adhesions, cannot freely move out of the way of the growing weight of the baby.

Eventually, women or people with endometriosis may choose to have a full hysterectomy. Even then, it doesn’t guarantee pain and symptoms will stop as the disease often grows around the bladder, bowel and other pelvis structures.

But getting a diagnosis in the first place is an uphill battle. The disease can only be confirmed during keyhole surgery, because ultrasounds and MRIs 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 needing a colostomy bag, an ectopic pregnancy and is battling infertility and all the physical and emotional strain that comes with it.

Nadine adds, ‘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 says, ‘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 to our 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 Lacuna Voices: ‘It takes on average a shocking eight years to diagnose endometriosis – a statistic that hasn’t decreased in a decade. Delayed diagnosis can have 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 also normalised the common symptoms of endometriosis such as heavy or painful periods, with women often being told to just “get on with it”. 

‘Endometriosis UK is working to reduce diagnosis time, and is working with healthcare practitioners and Governments to ensure everyone understands the symptoms and the impact of endometriosis.’

GetTing a GP 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 refer you, ask a different one in your clinic for a second opinion - it’s your right as a patient and remember, an ultrasound won’t often show endometriosis so a ‘normal’ scan doesn’t mean the disease isn’t there. You might need more investigations so if you have symptoms, keep pushing for answers.

• For more information and support, visit the NHS site, or Endometriosis UK

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