Chloe is making one of the hardest decisions a woman can make. After previous surgery failed to reduce the \u00ab\u00a0horrendous\u00a0\u00bb pain caused by her endometriosis, she is planning to have hysterectomy at the age of 26 – removing her womb and ending her chances of having a child.<\/p>\n
\u00ab\u00a0I’m at the point now where I would not be able to look after a child. It wouldn’t be fair. I just want everything out,\u00a0\u00bb she told me at her home in Edinburgh, while fighting back tears. \u00ab\u00a0I know it’s not a cure but I need to have a better quality of life.\u00a0\u00bb<\/p>\n
Chloe is one of the women I met over the six months I spent travelling the UK, investigating how the condition we share is affecting women’s lives for the documentary Emma Barnett: Fighting Endometriosis.<\/p>\n
It left me more convinced than ever that this invisible disease – which affects one in 10 women of reproductive age but lives in the shadows – is a silent medical emergency that doctors, researchers and policy-makers cannot ignore or overlook any longer.<\/p>\n
A common myth is that it is a painful period condition. That is wrong: endometriosis is a system-wide inflammatory disease. Cells, similar to those which line the womb, start to grow in other parts of the body – such as on the bowel or in the lungs – and multiply, creating raw and angry sores.<\/p>\n
Activated by the hormones of the menstrual cycle, these sores thicken and bleed each month, inflaming and scarring the surrounding tissue. Women can experience a range of symptoms depending on where their endometriosis is, or which organs are stuck together with scar tissue, but the hallmark of this condition is bone-grinding, life-altering pain.<\/p>\n
\u00ab\u00a0I’ve always got some form of deep ache, then I get these flare-ups where I feel I can’t speak, I can’t sleep, I can’t eat, I can’t do anything. It is horrendous, there is nothing that will ever, ever compare,\u00a0\u00bb Chloe told me.<\/p>\n
Dame Hilary Mantel wrote of her experiences of trying to live with endometriosis: \u00ab\u00a0Anything I have achieved has been in the teeth of the disease.\u00a0\u00bb The late Wolf Hall author’s choice of the word \u00ab\u00a0teeth\u00a0\u00bb was perfect and it is one I think of most days, as I grit my own.<\/p>\n
I was diagnosed 10 years ago, just before starting work at the BBC, as my husband and I were trying and failing to have children naturally. But I had known deep down something wasn’t right with me since the age of 10, when my periods and hormone cycle activated. It had taken a full 21 years to be diagnosed.<\/p>\n
The average amount of time it takes to be diagnosed in the UK is nine years and four months, according to a survey of more than 3,000 women with the condition by the charity, Endometriosis UK. For women in ethnic minority communities, it is even longer: 11 years.<\/p>\n
For Madalitso, who came to the UK from Malawi at the age of 13, it took a whopping 25 years for her to be diagnosed. Her symptoms had begun when her periods started aged 10. Her pain was so bad at one point in her late teens that doctors took out her perfectly healthy appendix, believing it was the source of her agony.<\/p>\n
Now scheduled for further surgery, which aims to cut out or destroy the endometriosis tissue, she told me: \u00ab\u00a0The main thing I want is just a relief of pain. It’s like getting my life back.\u00a0\u00bb<\/p>\n
While these years-long waits are maddening, too many stories about endometriosis focus solely on long diagnosis times and medical misogyny. I should know – I read or watch most of these reports. Getting a diagnosis is key, but that is only the beginning of a very hard journey. Then what do you do?<\/p>\n
The causes of endometriosis have left our best doctors and scientists totally flummoxed: no-one in the world knows definitively how and when it begins in a woman’s body.<\/p>\n
And right now there is no cure for a disease that is wreaking sheer havoc in the lives of more than 176 million women globally, according to Endometriosis UK. (I shudder to think of the women in the developing world with little or no access to basic healthcare.) It also affects their loved ones – who look on at this horror show feeling helpless.<\/p>\n
While surgery can reduce the pain for some women, for others it only works temporarily or not at all.<\/p>\n
Out of desperation, Chloe crowd-funded to have her previous surgery abroad, because of long NHS gynaecology waiting lists (almost 750,000 women are on such lists in the UK, according to the Royal College of Obstetricians and Gynaecologists).<\/p>\n
Endometriosis had already changed her life in every possible way since she was a girl. She went from being hugely active to barely being able to do anything because of the pain.<\/p>\n
The doctors had hoped the surgery would give Chloe relief for about five years, but there were soon signs the endometriosis had returned \u00ab\u00a0everywhere\u00a0\u00bb, she said.<\/p>\n
The young woman I met, who moved around her house slowly, living a very small life, going from heat pad to heat pad to soothe the pain and cramps, is now trying to carve out a route forward with further surgery to remove her womb.<\/p>\n
That is what endometriosis can do: remove choices. It is a thief. Sometimes it steals from you in broad daylight – ruining plans and preventing you from doing your job. Other times, you won’t realise what you have lost until it is gone – as relationships suffer and slowly break down.<\/p>\n
Chloe has to forge her own path to get help. The NHS has guidelines for managing endometriosis, but since the condition can affect many parts of the body there is no standardised management plan to guide women’s treatment or set time frames for their care.<\/p>\n
This is in contrast to other chronic conditions such as dementia and diabetes, which have specific NHS pathways for diagnosis and care. More than 1.5 million women in the UK live with endometriosis, according to Endometriosis UK, compared to just under a million with dementia. But the real number is thought to be considerably higher by charities and experts, as so many women are not diagnosed.<\/p>\n
I put this point about the lack of an NHS pathway to then Health Secretary Wes Streeting just a few weeks ago, before his resignation. In a telling exchange, he shared his surprise with me that there wasn’t one.<\/p>\n
\u00ab\u00a0Yes, that should already exist. It should, and I accept that,\u00a0\u00bb he said.<\/p>\n
A Department for Health and Social Care spokesperson said the government was determined to speed up diagnosis of endometriosis. It is also prioritising research into women’s health and redesigning the way patients get help for pelvic pain and endometriosis, to reduce repeat appointments, unnecessary referrals and long waits, the spokesperson said.<\/p>\n
Streeting also said he would look into lack of specific funding for endometriosis research – after I raised the examples of Australia and France having created national action plans for the disease. \u00ab\u00a0There is more money going in, but I take up your challenge that there needs to be more of a dedicated focus,\u00a0\u00bb he said.<\/p>\n
This is a condition that costs the economy \u00a312.5bn because it leaves women unable to work in addition to the healthcare costs, Dr Lucy Whittaker, an endometriosis researcher at the University of Edinburgh, told me. She said an estimated one in six women with the condition in the UK ends up leaving the workforce permanently because of its effect on their health.<\/p>\n
It may not kill women. But for so many I have been talking to, it is a living death. They cannot work, be in relationships, care for their children (if they can have them), or simply just be in their own bodies, peacefully.<\/p>\n
While ill, they have to beg doctors to believe them and somehow assemble their own care team to try to help them live with a disease that has so far outfoxed the best minds worldwide. Even if they come under the care of one of the rare specialist endometriosis centres, it is still a battle to know which way to turn.<\/p>\n
Women with endometriosis want to be cared for, properly. But doctors need answers too. This means much more focus on endometriosis by researchers in ambitious projects and from the people that fund them. And to keep going until the mystery is solved.<\/p>\n
We cannot leave women living within the teeth of this vicious disease.<\/p>\n","protected":false},"excerpt":{"rendered":"
Chloe is making one of the hardest decisions a woman can make. After previous surgery failed to reduce the \u00ab\u00a0horrendous\u00a0\u00bb pain caused by her endometriosis, she is planning to have hysterectomy at the age of 26 – removing her womb and ending her chances of having a child. \u00ab\u00a0I’m at the point now where I […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":{"0":"post-10185","1":"post","2":"type-post","3":"status-publish","4":"format-standard","6":"category-uncategorized"},"_links":{"self":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts\/10185","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/comments?post=10185"}],"version-history":[{"count":0,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts\/10185\/revisions"}],"wp:attachment":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/media?parent=10185"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/categories?post=10185"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/tags?post=10185"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}