Endometriosis: Debilitating disease affecting more than 1.5m UK women still being misdiagnosed

Women wait an average of 7.5 years before receiving validation they are suffering from a very real illness. But why is it taking so long?

Endometriosis is thought to affect 176 million women worldwide (Rex)

As many as 1.5 million women in the UK are suffering from a debilitating condition as common as asthma, diabetes or back pain.

Yet many won’t have heard of endometriosis, a hidden, acutely painful, disease of the reproductive system, thought to affect one in 10 women worldwide.

Endometriosis takes an average of 7.5 years to diagnose and women can be left suffering devastating symptoms for years before receiving the validation they have a very real illness, the NHS watchdog found last year.

“I think one of the really difficult things for women is when they’re not believed,” Emma Cox, chief executive of charity Endometriosis UK, told The Independent. “When they’re not diagnosed, they lose their jobs because they’re having ‘too much unaccounted sick time’. It’s heartbreaking, and it happens.

“You think you’ve got stomach problems, food poisoning. You might be being tested for IBS and appendicitis but on your sickness record it just looks like a lot of time off.”

Last year, the National Institute of Health and Care Excellence (NICE) issued new guidelines for GPs in a bid to speed up diagnosis and treatment of the complex disease. For the first time, doctors were explicitly told not to rule out the condition for any woman presenting with pelvic pain, even where multiple tests have failed to find it.

But the recommendations also delivered a clear message to the medical community that chronic female pain is to be believed - a significant obstacle faced by many sufferers.

Olivia, 27, was diagnosed with endometriosis 10 years after she first started having symptoms. She described an uphill battle to receive the vindication that her pain was not normal, and treatment options that were “between a rock and hard place”.

“One of my main issues was that I had no awareness that what I was going through wasn’t normal,” she told The Independent. “I didn’t know pain during sex wasn’t something experienced by lots of women. The niggling pains on and off in my stomach that would come and go, I didn’t have a name for. It took the pain to get to crippling A and E levels for me to get a diagnosis.”

While the NICE guidelines have catalysed some positive movement from the royal colleges responsible for training GPs and gynaecologists, the charity says awareness among the medical profession and the general public remains a major hurdle.

Endometriosis causes cells similar to those found in the lining of the womb to grow elsewhere in the body and can provoke a host of symptoms, often confused with other disorders, including: painful periods, crippling fatigue, bowel and bladder problems, and in some severe cases infertility. It can also produce no symptoms at all. The disease is chronic, with a high recurrence rate, and currently has no cure.

The fraction of women in the UK who have a formal diagnosis often say the fight to that point can be just as gruelling as the symptoms, taking a significant toll on their mental health and often requiring dozens, if not hundreds of visits to the doctor. For many, diagnosis is just the first hurdle in a long, chequered road to recovery.

So why isn’t endometriosis the first thing doctors think of?

While the answers are complex, research points to a societal willingness to write-off pelvic pain as a “natural” part of menstruation. Endometriosis UK is currently lobbying for menstrual wellbeing to be included on the school curriculum to put right some of the dangerous misconceptions around menstruation.

Laura, 25, said she had no idea that some of the symptoms she had suffered since she was a teenager may have been markers of the disease.

“I used to have dark brown periods, which is indicative of old blood. I would bleed on and off throughout the month, when I had sex, when I did strenuous exercise,” she told The Independent.

“I told my GP my periods were irregular and heavy, but they just put me on the pill to try and establish a more regular cycle – they never questioned why I was bleeding throughout the month.”

Part of the difficulty for diagnostic physicians is that no two women will present with exactly the same symptoms, which can differ vastly depending on where the endometrial cells embed.

Common sites include the pelvic cavity, ovaries, fallopian tubes and beyond, but it can also be found on the bowel, liver and even the diaphragm and lungs. The pain can differ from sufferer to sufferer, from stabbing or aching to burning, dragging or slicing.

While heavy periods are a common symptom, they are not the sole indicator. Sufferers can experience pain and bleeding throughout the menstrual cycle – something they may not even identify as abnormal.

Studies have suggested endometriosis could be a factor for as many as half of women undergoing fertility treatment, as scarring and endometriotic deposits block and distort the reproductive organs.

Symptoms like constipation, or pain while urinating can act as red herrings for GPs. Pain during sex is also common.

Before she was diagnosed with endometriosis, Laura was told she needed to “relax” more during sex, and to try having a glass of wine beforehand to make intimacy less painful.

“I’m a 25-year-old woman who cannot have sex because it’s so painful,” she said.

“That’s a devastating thing to come to terms with at any age, let alone for someone so young. I wish my GP had believed me when I said it wasn’t because I was scared or had suffered sexual trauma.”

Olivia said managing problems with sexual intimacy was one of the hardest parts for her and placed a significant strain on her relationship.

“It makes you feel that a part of my femininity is taken, or missing. Endometriosis blocks that closeness you both crave and you can’t help but blame your body, causing a sense of guilt and shame,” she said. “Sometimes it feels like you have to sacrifice intimacy to prioritise pain management. Handling this is probably what I have found most challenging.”

Some women are diagnosed more quickly. A pelvic exam, ultrasound or MRI may reveal a cyst or nodule, or a GP has seen a similar case before and knows how to piece the puzzle together.

But often, doctors are forced to carry out a series of elimination tests, treatments and referrals to different specialisms – which can take months or even years – before considering something like endometriosis.

“As a GP, I first have to ask ‘what’s the worst thing it could be? Cancer, how do I rule that out?” Dr Zoe Norris, a GP who works as a locum in a number of practices around Hull and East Yorkshire, told The Independent.

“‘Then what’s the most common thing it could be? Irritable bowel syndrome, that’s a diagnosis of exclusion, so it’s likely to need a number of other investigations: blood tests, internal swabs, maybe a scan.

“Then maybe you discover, by accident, that it’s endometriosis causing those symptoms.”

She added: “It’s very similar to ovarian cancer in the way that the presentation can be completely different to what you think it’s going to be. Diagnoses can take a long-time to make and in that time you’ve got a woman in serious pain.”

Sofi, 33, was diagnosed with IBS in her teens. But when she started suffering worsening symptoms in her 20s, including constipation and stabbing digestive pains during her period, she was referred to a gastroenterologist.

Her consultant decided to carry out a colonoscopy, which revealed endometriosis had infiltrated her bowel wall like a tumour.

In an ideal world, the NICE guidelines, along with a growing trend for GPs to specialise in areas like women’s health, should make it more common for GPs to at least consider endometriosis more readily as a diagnosis.

But smaller practices may lack a specialist, and doctors have ingrained habits, biases, and misconceptions – just like the wider public – which can lead to even seemingly textbook symptoms being discounted as “period pain” for long spells.

“Unless it’s absolutely barn door-obvious on a scan, I can only be 100 per cent confident if they have a laparoscopy,” Dr Norris said.

Diagnostic laparoscopy is currently the only way of diagnosing endometriosis. A small camera is inserted into the belly button to view the reproductive organs up close, but the surgery also requires a move into specialist care and often long wait times.

The NHS has an 18-week target from GP referral to being treated, but often this only gets the patient a diagnosis – or sometimes even just another appointment.

With the health service working at maximum capacity, it regularly makes seemingly callous decisions about what is urgent and what must wait – and sufferers can find themselves at the back of another queue.

“Surgery for endometriosis is counted as ‘elective surgery’, because it’s ‘not going to kill you if you don’t do it’,” Ms Cox, with Endometriosis UK, said. “Yet you have women who can’t work, who can’t go out, they can’t do anything.”

This winter, the NHS was told to put all elective care on hold throughout January, cancelling tens of thousands of operations, to better cope with a huge increase in demand over Christmas.

“I know women waiting many months to get appointments because there’s just not the capacity,” she added.

There’s also the question of accessing the right treatment.

General gynaecology departments in a hospital can only manage mild to moderate levels of endometriosis, either with medication – painkillers and hormonal treatment – or with simple surgery.

But more severe cases require referral to a specialist centre. Under NHS guidelines, women with stage three or four disease have a right to receive specialist treatment in one of 50 British Society of Gynaecological Endoscopy accredited centres across the UK.

“The right service depends on the extent, and the position of the endometriosis tissue,” Mr Sanjay Vyas, a senior gynaecologist at Southmead Hospital in Bristol and vice president elect of the BSGE, told The Independent.

While mild to moderate cases are in “the majority”, in his experience, a not insignificant number of women have severe endometriosis. “That’s only areas where endometrial tissue isn’t lying over any other structure, like the bowel, the bladder or the ureters which take urine from the kidney to the bladder. That’s deep in the pelvis and really the area where endometriosis can lie as well.”

Those women must then navigate the difficult path after diagnosis and first treatment.

“The treatment and knowledge of what will happen next is so limited. I am told following my surgery the endometriosis could regrow within six months or it may resurface never again. I might need repeat surgeries, I might not,” Olivia said.

“Overall I have the feeling that I really shouldn’t be too downhearted, compared to other conditions, endometriosis is far from life threatening. But it is life altering. Because it is invisible and taboo that makes it harder.”