‘Endometriosis is a slow, living death for many women’

Broadcaster Emma Barnett was diagnosed with endometriosis 10 years ago, three months before she started at the BBC, and has been severely impacted by it.

Now, she has made the first British TV documentary focusing exclusively on the illness.

Considering it affects an estimated one in 10 of reproductive age women worldwide, this statement is staggering.

‘I don’t think people even know how to spell it still,’ Emma admitted to Metro.

In her hour-long programme, Emma Barnett: Fighting Endometriosis, she shines a light on the condition by speaking to women struggling with it, picking the brains of specialists and grilling former health secretary Wes Streeting.

Emma also shares her personal journey through self-recorded videos where she candidly talks about her pain as it’s happening.

‘On a serious note, those home videos have really held me to account. I think I regularly airbrush my own life to myself, where I say: “That day was fine.” And actually now I’ve seen a video, I’m like: “Your birthday was a bit ropey, to say the least.”‘

The documentary shows starkly what this condition can take from women.

In her mid-twenties, 26-year-old Chloe was forced to make the life-changing decision about whether or not to have children, because of the agony she finds herself in.

Emma, who struggled to get pregnant herself, is visibly moved by Chloe’s story. She said: ‘Often I meet women whose fertility has been affected, and hers [Chloe’s] will be if she manages to go through with a hysterectomy.

‘But what she decided was even more extreme than that – she couldn’t even consider having children, because she wouldn’t be well enough to look after them. And that was of a whole other magnitude. 

‘Endometriosis is a thief. It steals from you. Sometimes it mugs you in broad daylight, and sometimes you don’t know what it’s taken until it’s gone.

‘It might not be a life threatening condition in the way that, for instance, we obviously have to see things like cancer, but it is a living death for many, many women, and it’s a slow one.’ 

Despite the excruciating turmoil Emma might be able to feel inside her body at times, she talks about managing to get her ‘game face on’ at work.

The 41-year-old presents on BBC Radio 4’s Today and previously hosted Woman’s Hour for three years.

She quit the latter in 2024, and speaks about a time when she effectively blacked out during one of the live broadcasts, yet was able to produce an hour-long show: ‘There was a 75th anniversary of Woman’s Hour […] and my producer at the time looked at me just before we were about to go live.

‘And I think she thought: “Is she okay?” I cannot remember a single thing about that programme.

‘The pain was incredibly bad that day, but it was a great programme, I’m told,’ Emma laughed.

Responding to my incredulous reaction and explaining how those around her respond to the illness and vice versa, Emma explained: ‘What I do have, which I think helps colleagues and friends and family, is a very dark sense of humour, and I don’t know if it’s being a woman. I don’t know if it’s being northern.

‘I’m Jewish, culturally we try and make dark jokes, perhaps about bad things that happen just to try and get through. I don’t know, but I think that helps.’

While Emma’s ability to laugh during the hard times might be one way of dealing with the disease, her rage has been a driving force for her creating this documentary and seeking answers from those in positions of power.

She stated: ‘My anger in this film even shocked me when I watched it back. I am enraged and I am a woman who does have a difficult part of this condition. 

‘It’s got worse as I’ve got older, but I am able to work. Lots of women are not.

‘And I feel a huge duty now to represent as much as I can those women and put my journalism to use to show how this isn’t being taken seriously as the silent and invisible emergency that it is.’

In an interview with Streeting, Emma asks why there is no specific endometriosis pathway once women are diagnosed.

He responds: ‘Well, there should be, I think, is the simple answer to that.’

Laughing in what appears to be disbelief, Emma scoffs: ‘Well you’re the Health Secretary!’

The politician then assures her that ‘there are some improvements that are coming’, but the BBC presenter looks unconvinced.

Chatting ahead of the documentary release, Emma remarked: ‘The medical world in itself is hysterical and has hysteria when it comes to its lack of understanding of women’s bodies and its commitment to not understanding them until extremely recently.’

A clear example of that presents itself in the documentary through 35-year-old Mada, whose diagnosis for endometriosis took nearly 25 years of pain.

She had her appendix needlessly removed, was misdiagnosed with irritable bowel syndrome and found herself unable to get out of bed.

When asked what shocked Emma the most while making the documentary, she responded: ‘The fact that women’s bodies were seen as too complicated to even study until really recently because of that whole “womb thing.”‘

Emma went on: ‘There has been this weird myth around endometriosis […] that it was somehow associated with women’s independence, intelligence, or, I’ve had said to me: “It does seem to always be with women who are very career focused” as if by being busy, I’ve brought this upon myself.’ 

As the documentary draws to a close, Emma talks about just ‘wanting her womb out’ because of the daily pain she is now experiencing.

On what it’s been like to consider a hysterectomy, Emma reflected: ‘It’s a bit of life imitating art, if I could put it like that. I didn’t expect it to be how it had become, and I’m still seeking medical advice on that. But I didn’t want to not be honest either. I wanted to say this is a very real thing for me as well at the moment.’ 

Emma Barnett: Fighting Endometriosis is available to watch on BBC iPlayer.

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