The chronic condition that affects 1 in 10 women and can take 7 years to diagnose

Dec 10, 2019

One in ten women suffer from it. ⁽¹⁾ Statistically, it’s as common as diabetes. And yet there’s a good chance you’ve never heard of it.

It can cause searing pain so severe, sufferers frequently pass out and have to be hospitalised. There’s no definite cure, and the cause remains unknown. The debilitating disease in question? Endometriosis. ⁽²⁾

Having lived with the condition for decades, it’s a subject particularly close to Conscious Spaces Founder Tara’s heart: “My own intense struggle with endo brought me, quite literally, to my knees and forced me to consider what ‘wellbeing’ really means – triggering the start of an ongoing journey of learning and understanding, and a quest for answers as well as solutions – of which the launch of Conscious Spaces was a huge part. I want to show that even if you feel alone or hopeless, there is a way forwards.”

Wake-up Call

Thanks to a new BBC survey of more than 13,500 women with endometriosis ⁽³⁾(making it the largest study of its kind), the life-shattering impact of this all too often misunderstood condition has recently come into focus, triggering a long-overdue wake-up call to the scale of the problem.

Shockingly, half of those surveyed by the BBC revealed they had experienced suicidal thoughts, whilst ‘most’ said they depend on prescription painkillers just to get through the day. Almost all of those that took part in the research said that having endometriosis had badly affected their relationships, mental health, education and career.

The expert’s reaction

Commenting on the trailblazing study, Emma Cox, CEO of Endometriosis UK ⁽⁴⁾ said “This shocking new research is a stark reminder that both society and the NHS need to wake up and accept that endometriosis is a chronic condition that cannot be brushed under the carpet.

The potentially devastating impact this condition can have on people’s physical and mental health cannot be overstated. Without investment in research, a reduction in diagnosis time and better access to pain management, women will continue to face huge barriers in accessing the right treatment at the right time.”

What exactly is Endometriosis?

Endometriosis isn’t cancer, it’s not contagious and it’s not an infection. It is a chronic condition that affects women, ⁽⁵⁾ in which tissue that’s similar to, but not the same as, the lining of the womb is found elsewhere in the body; from the bladder, bowels and reproductive organs to the abdomen and even, in rare cases, the brain. Just like the lining of the womb, every month this endometrial tissue sheds and bleeds – except of course, unlike with a period, there’s nowhere for it to go. Instead it causes internal inflammation and scarring, which in turn can lead to excruciating pain.

Endometriosis: six shocking facts and figures

Endometriosis affects an estimated 10% ⁽⁶⁾ of reproductive-age women worldwide.
Up to 50% ⁽⁷⁾ of women with infertility also have endometriosis.
On average, it currently takes between seven to eight years ⁽⁸⁾ to diagnose endometriosis.
Endometriosis is the second most common ⁽⁹⁾ gynaecological condition.
Many sufferers have to wait until ⁽¹⁰⁾ the onset of their menopause before symptoms may start to improve.
In a 2012 study, endometriosis was already estimated to cost the UK economy £8.2billion ⁽¹¹⁾ every year in healthcare costs, treatment and lost productivity.

Signs and symptoms

Endometriosis can affect all women of childbearing age and symptoms include:

Painful or heavy periods
Chronic pain, often in the pelvis or back
Bowel and bladder problems
Infertility or difficulty conceiving
Painful sex
Fatigue / lack of energy
Depression and isolation

Endometriosis symptoms can vary from person to person, with severity often determined by the location and extent of the endometriosis in the body.

How it feels to have endo

19-year-old Bethany Willis, who took part in the BBC’s research, began experiencing symptoms aged just nine. She describes the pain ⁽¹²⁾ as being “like barbed wire wrapped around your insides and someone’s pulling it.”

Another woman to open up to the BBC was Rebekah, who said endometriosis feels as if "someone's getting a knife and just whipping it round on the inside. There have been times I've vomited just because it's so much on my body. It's ten years of the same symptoms just getting progressively worse and no real investigation as to why. This year? five times I've been in hospital A&E because of pain."

Conscious Spaces Founder Tara was 18 years old when she developed mysterious, agonising pain around her periods, often causing her to pass out. She says: “No pain killers would touch it. The contractions I experienced were so severe that I would need to go and see a practitioner to realign my hips and pelvis every month. I was constantly exhausted, and at my lowest ebb, I was almost entirely bedridden.”

Why does endometriosis happen?

Despite the fact that endometriosis was first described more than 100 years ago, ⁽¹³⁾ whilst there are several theories, nobody knows exactly what causes endometriosis.

Whilst no one thing can account for all cases, it’s thought that a combination of the following factors could lead to endometriosis developing ⁽¹⁴⁾ in some women:

Genetic predisposition
Reduced immunity
Retrograde menstruation (when, during a period, some of the womb lining flows backwards towards the abdomen and implants itself on organs)
Lymphatic or circulatory spread (tissue travelling round the body through the bloodstream or lymphatic system)
Metaplasia (the process where one type of cell changes into a different kind of cell)

Intriguingly, there is growing interest in the role of environmental factors in the development of endo, with some scientists looking at how exposure to environmental toxins ⁽¹⁵⁾ can lead to chronic inflammation in the body, thereby affecting the immune system, disrupting hormone levels (potentially increasing estrogen synthesis) and possibly promoting endometriosis.

The struggle for a diagnosis

The sad reality is that, on average, it currently takes seven and a half years to diagnose endometriosis in the UK.

With no singular identified cause, no simple way of testing for the condition, plus a lack of awareness amongst many health professionals, misdiagnosis and delayed diagnosis is frustratingly common.

Because the symptoms of endometriosis can mimic other conditions - such as irritable bowel syndrome and polycystic ovary syndrome, for example, this can add to the difficulty and confusion in receiving a correct diagnosis.

Sadie, who spoke to the BBC ⁽¹⁶⁾ as part of their recent research, revealed: "I've seen doctors who have never heard of it. It's 16 years and it's only sort of been in the last 12 months they've mentioned this condition. I've seen in the region of about 50 doctors.”

Fellow sufferer and research participant Rebekah echoed Sadie’s sentiments, saying: “I find myself a lot of the time explaining what Endometriosis is and how it affects me to doctors. I constantly feel like I have to fight."

Conscious Spaces Founder Tara says of her own battle to understand what was wrong with her: “I didn’t know why or how this was happening to me; meaning I found it almost impossible to explain what I was going through. Doctors seemed similarly puzzled by how best to help me. There was very little knowledge around or treatment available for my symptoms, which was isolating and confusing. Eventually, after many years of significant health issues, I was diagnosed with endometriosis, ME and Post Viral Chronic Fatigue Syndrome (CFS).”

At present, the only definitive way of diagnosing endometriosis is through keyhole surgery. This does, however, come with its own complications (and should only ever be carried out by a skilled excision surgeon) – as well as presenting a significant cost to the health service.

The ‘gender pain gap’

You might wonder why, if as many people suffer from endo as diabetes, is there so little funding put behind research into endo in comparison?

Given endometriosis only affects women, do we perhaps need to consider whether gender has potentially played a role in the lack of support shown?

Interestingly, discussion around the evidence of a so-called ‘gender pain gap’ has been building.

Consultant Gynecologist Professor Andrew Horne told the BBC that, “historically, women’s health research has suffered - largely because men have been making decisions about which conditions to give limited research funding to.”

Endo sufferer Bex said: “I think society doesn’t take women’s pain as seriously as they should,'' echoing Minister for Women’s Health Caroline Dinenage’s comment ⁽¹⁷⁾ that: "too often across society women's bodies are seen as an inconvenience, with their symptoms and health concerns not taken seriously enough.”

Is change on the horizon?

Whilst there is still no known cure for endo (only treatment options to reduce the severity of symptoms), it seems that thanks to research like the BBC survey, awareness is increasing.

Professor Horne shared his positive outlook for the future, saying: “I think things are changing with regards to the previous lack of training. For example, Endometriosis UK and the Royal College of GPs have put together an online education package programme about endometriosis for GPs and I think this will have a big impact of raising awareness of the condition amongst doctors. And also, there has been a push towards more funding towards trying to understand the condition.”

In a promising step forward, following the BBC’s findings, last month MPs announced plans to launch an official inquiry into women’s experiences of endometriosis.