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We need to talk about Endometriosis

As more and more women suffering from Endometriosis take their own lives due to a lack of support, we ask the question: why isn’t the debilitating condition being treated with the severity it deserves?

For many women, cramps, back pain and nausea are all part of the package when it’s that time of the month – an inconvenience at best and a day in bed at worst.

But for those with Endometriosis, a period can be debilitating, causing blinding pain that can lead to blackouts and even infertility.

Despite the fact that it affects one in ten women worldwide, and the detrimental impact that it’s having on their lives, the hidden condition receives very little media attention, almost no research funding and can take a baffling seven and a half years to diagnose.

Why then, if it’s so common, has it been met with a lack of support that has in some cases driven those suffering to suicide?

Endometriosis is when the lining of the womb begins to grow outside of the uterus and in other parts of the body. Often spreading within the pelvic cavity on the ovaries, bowel and bladder, it can also – in rare occasions – reach the liver, lungs and brain.

Although the tissue is not where it should be, it still responds to female hormones throughout the menstrual cycle, thickening and falling away as it would during a period.

Without an escape route, this causes irritation, inflammation and excruciating pain from just the slightest movement, as well as the development of scar tissue which can bind together normally mobile internal organs.

It’s understandable therefore, that without receiving the necessary attention they deserve, the women with symptoms of the condition have felt alone and unable to cope.

In fact, according to the BBC, out of the 13,500 women that took part in a study exploring how living with Endometriosis affected them, half of the respondents revealed that they had experienced suicidal thoughts and relied on prescription painkillers to get through the day.

Following these results, the UK government is now preparing to launch an enquiry into the condition, finally realising that its physical and mental implications are something that truly cannot be overlooked any longer.

‘These figures are a stark reminder that physical and mental health are not felt separately, yet health services still too often cannot deal with them both at the same time,’ says chief executive of the Centre for Mental Health Sarah Hughes.

While it is indeed a step in the right direction towards confronting this issue, what does the inherent lack of any previous action say about society’s attitudes to women’s health?

A great deal actually. Alongside the near absence of any information about Endometriosis online, the fact that something’s only just being done about it proves that women’s health simply isn’t taken as seriously as men’s.

As one of the most common gynaecological problems in the UK, we need to question why it isn’t considered a priority to treat in the same way as other illnesses affecting either both genders or just men. And why, when governments are tasked with choosing which cuts to make, it’s often women that are hit the hardest.

‘When I went to my GP I was told that the gynaecologist service had been taken out of hospitals and clinics. We’ve seen so many damaging decisions like this across the board, yet another huge devaluation of women’s health,’ says Mattie Lacey-Davidson who’s been suffering from Endometriosis for over a decade.

Men have traditionally been at the forefront of decision-making regarding which conditions should receive funding, frequently being chosen over women to trial new medication or treatments because female bodies are not regarded as the ‘default’ in these circumstances.

Consequently, extremely little research investment has been given to tackling Endometriosis and this urgently needs to change in order to reduce diagnosis time and develop effective treatments.

‘All too often, women are told their pain is ‘normal’ or ‘in their head’,’ says CEO of Endometriosis UK Emma Cox. ‘As it’s a hidden condition, it can be hard for those with the disease to get others to understand or believe the level of pain they are suffering from.’

The ‘gender pain gap’ is evident here. This refers to the dismissal of women’s conditions purely because of their sex, springing from a cultural and institutional reluctance to overcome bias that women are prone to overreacting.

Within the medical profession, the marginalisation of women has seen countless female patients turned away and told to stop complaining, particularly those with a history of ‘hysteria’ (an outdated term with hugely sexist connotations in itself).

If women’s menstrual wellbeing isn’t an area that people feel entirely comfortable talking about, and if they aren’t taken seriously because of their gender, those suffering will continue to face huge barriers in accessing the right treatment at the right time and this needs to be rectified.

‘As women, the health services have been historically pitted against us, our minds and our bodies, leaving us undervalued, ignored and misbelieved,’ says Lacey-Davidson.

‘There have been GP appointments where my symptoms have been completely dismissed and I have to wonder how much better the condition would be understood, taken seriously and more readily diagnosed if it were not isolated to the female body,’ she adds.

Managing to secure any kind of assessment for extreme pain surrounding menstruation shouldn’t be a chore. And it shouldn’t take years to convince doctors to do something about it, especially since gynaecological conditions threaten fertility and dramatically reduce women’s quality of life.

Jaimee Rae McCormack, who also suffers from the disease, believes that health workers should be more educated on how to deal with it and that they need to be to taught to diagnose and treat people in the same way, regardless of who they are and what they’re suffering from.

‘They need to open their eyes and learn a bit more,’ she says. ‘If more people are trained, it would save time, money, people’s mentality and lives really.’

This is of course a significant starting point, but it’s equally as important that the public understands quite how severe Endometriosis really is and who better to spread awareness than the celebrities and public figures that we look up to?

Actress Lena Dunham is one of the many famous women that’s been open about her experience with the condition, sharing her journey with her three million Instagram followers and in a personal essay she wrote for Vogue.

Though treatments range from everyday over-the-counter painkillers and the contraceptive pill to medical procedures and invasive surgery, there still isn’t a straightforward cure and sometimes a hysterectomy is the only option.

‘With pain like this, I will never be able to be anyone’s mother, even if I could get pregnant, there’s nothing I can offer,’ Dunham said upon choosing to get her womb removed, a much more extreme way of combating the disease.

Her decision was an impossible one, but her honesty is admirable and has started the long overdue conversation about the importance of women taking control over their own bodies.

‘I know that a hysterectomy isn’t the right choice for everyone,’ she said. ‘That it’s not a guarantee that this pain will disappear, and that you are performing it due to your deeply held, essential and – to my mind – feminist belief that women should be able to make a choice about how they want to spend their childbearing years’.

Dunham hopes for a world where illness isn’t equated with weakness and where mental health issues do not discount physical ones.

‘I am one of many women who grasp for a sense of consistent well-being, fight against the betrayals of their bodies, and who are often met with scepticism by doctors trained to view painful periods as the lot of women who should learn to grin and bear it,’ she says.

The fact that women have to work extra hard just to prove what they already know about their own bodies and beg for what they need to be well is again symptomatic of a wider historical issue of men being more privileged that women within the medical community.

But times are genuinely changing. The BBC survey and government enquiry has finally brought to light that extreme period pain isn’t normal and shouldn’t be stigmatised.

It’s also giving the condition much-needed media attention, a welcome move in helping to make people feel less ashamed when talking about it. Care evidently needs to go beyond diagnosis, reaching people when they’re young to prevent years of solitary trauma, stress, frustration and pain because those suffering are not alone.

The support shown so far for celebrities who’ve shared their own experiences with the affliction is indicative of a promising future, but we must continue striving to encourage more open discussion and smash the taboo around women’s health. It’s about time.