One in 10 women have Endometriosis: The crippling condition that takes years to diagnose
“I was at A&E. I was screaming in pain. It felt like somebody had stuck barbed wire through my insides. The doctor came over to me and said ‘You need to calm down,’ and I said, ‘No, you need to help me.’ ‘There’s nothing wrong with you, it’s all in your head. You need to go home and stop wasting our time.’ The nurse took out my cannula and told me I can go home now, but I said: ‘You’ve not done anything. I’m still in pain.’ I crawled out of the A&E, and sat on the pavement, crying. And, so, I thought, maybe it is in my head. I’ve lost it. But a week later, I’m back at A&E again.”
Meet Emmie McGee, a 22-year-old Londoner, who has suffered with agonising chronic pain in her pelvis since getting her first period. She estimates that she’s seen a doctor about 60 times in those 10 years to help her find the cause of, and the treatment for, her debilitating and often depressing condition. She’s been prescribed everything from hormonal treatment and antidepressants, to morphine and a laparoscopy, but most frequently, she’s asked to “just calm down”. Today, Emmie and her doctors are sure she has endometriosis, a gynaecological condition affecting one in 10 women in the UK that can be extremely painful, and can lead to infertility. On average, it takes seven years to diagnose. There is no cure.
“Endometriosis is a common condition where tissue that behaves like the lining of the womb is found in other parts of the body, creating little scars or adhesions.”
It can appear anywhere around female sex organs, most commonly around the ovaries, uterus and the bladder. The main symptoms of endometriosis are pelvic pain, extremely painful, heavy periods, and pain during or after sex. The only gold-standard way to diagnose endometriosis is by performing a laparoscopy. (NHS UK, 2018)
The world of endometriosis is one where women are dismissed, disbelieved and misdiagnosed every day. A world where some of the strongest opiates are prescribed in order to hide pain, instead of treating its cause. A world where popping hormones is the norm, and where girls cry themselves to sleep because they can’t work, walk or have sex due to the agonising pain.
The prevalence of endometriosis and diabetes in women in the UK is roughly the same. (Diabetes UK, 2017 and Endometriosis UK, 2018) Billions of pounds are invested into diabetes, an illness that is often self-induced and can be cured with lifestyle changes. Yet close to no research or funding has been invested into endometriosis, an illness which women are born with and can’t cure.
The main concern among women with endometriosis is that it takes so long to diagnose, which ultimately prolongs their suffering and increases their risk of infertility.
Mr Fevzi Shakir believes there are many reasons for the delay. He is a gynaecologist at the Royal Free Hospital and the London Bridge Hospital, specialised in advanced minimally invasive gynaecological endoscopic surgery, with a special interest in endometriosis. He believes that one of the main reasons for the delay is the non-specific nature of the symptoms and a lack of awareness in both patients, and doctors. “Sometimes patients are told through family members that their symptoms are normal and a part of growing up,” he says. “The second biggest reason is the fact that the symptoms are not specific to one condition only, and could suggest many other diagnoses, most commonly IBS (Irritable bowel syndrome).” Dr Shakir explains that the whole process takes a long time because not everyone has access to immediate health care. (The “Endometriosis Package”, not inclusive of the diagnostic laparoscopy, comes up to £620 at the London Gynaecology, a private practice in London.) “It takes time to see your GP, to be referred to the hospital and to have the right specialist see you. Everything in the path way has to go perfectly for you to be seen by a specialist and be treated very quickly.”
Like most women in the UK, Emmie cannot afford private health care. But there is hope: Endometriosis UK, a charity, provides support and a friendly community for the many patients who feel alone.
Helen McLaughlin, co-Leader of the Endometriosis UK London support group, was diagnosed in 2011. She believes that the reason the illness takes so long to be acknowledged by doctors comes down to history and culture. “Women’s pain isn’t taken as seriously as men’s. It’s assumed that women have periods and they hurt, and in some families, they hurt more,” she says. “Men have been in charge for a long time, and they decide where the funding goes. They make decisions, so if they don’t know about women’s issues, they won’t raise them.”
“I have a friend with endo who got run over by a motorbike. She says that the endo pain was worse. But because doctors could relate to the motorbike pain better, she got a lot more understanding and help.”
Mr Shakir agrees that funding plays a role in the late diagnoses. “The NHS is under-resourced. Endometriosis is not like cancer that can cause mortality. But that’s not to say it’s not important, it is something that causes significant problems for women and should be taken seriously. But ultimately when there is very, very little money, there have to be some priorities.”
Chances are, you know someone who suffers from endometriosis. Whether endometriosis is neglected due to the under-financed NHS or due to cultural stereotypes, raising awareness about it can help move sufferers and doctors forward.
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