Endo the Battle: 'I made a documentary about my endometriosis battle - I thought I was going to die'

Fisayo Thompson remembers having pelvic pain a year before her period began. The filmmaker and director, who grew up in Lagos, Nigeria, experienced periods so painful that they disrupted her education and often left her ending up in hospital.

In 2023, she decided to turn her experience with endometriosis into a documentary called Walking Through Walls, which showcases the reality of navigating the pain, barriers patients face when trying to access a diagnosis and the mental health impact of endometriosis.

Fisayo said: “I come from a culture where in my days when we were young, girls talking about menstrual health was quite a taboo. So I didn't talk about it for many years.”

Fisayo got married, had three children and moved to London, but her and her husband knew there was something wrong with her health - they just couldn’t pinpoint what that was, with Fisayo facing many misdiagnoses along the way including IBS, seizures and epilepsy.

They kept investigating, however the long waits made getting answers a challenge.

“We all know the NHS, it takes so long, waiting times for MRIs, for scans, many of which come back negative,” Fisayo added.

“Then you're referred again and it's sometimes up to a year to see the consultant. It was just a very terrible cycle for years.”

It takes on average eight years and 10 months to get a diagnosis for endometriosis. But with the numbers of women on gynaecology waiting lists in the UK standing at three-quarters of a million, many patients are turning to private care, or seeking care further afield to access treatment or a diagnosis as navigating the waits means symptoms are often left to progress.

This Endometriosis Awareness Month, we have launched the Endo the Battle campaign, to amplify the voices of patients with the common condition.

And we want to hear from you. If you have endometriosis or have experienced symptoms, we’d love to hear your story. You can anonymously share your experience navigating endometriosis via our survey.

‘I think I might actually die’

Fisayo’s symptoms worsened so severely, that she started to fear for her life.

She added: “I remember telling my husband - I think I may actually die from this thing, you know, before even knowing what was wrong. And I have three kids, so I was very, very fearful for the future of my kids, my family, my loved ones.”

In 2021, her and her husband decided to go private, they saw a bowel surgeon who suggested she had “advanced stage cancer” as she was “too sick” for it to “just be endometriosis”. They recommended surgery, however when she woke up she was told nothing was found.

“I went into that surgery very fearful then came out and I was told nothing was found and that was very surprising,” Fisayo said.

“I'd spent thousands, tens of thousands of pounds of cash for that surgery to not get anything.”

She decided to seek treatment outside of the UK and in 2022 travelled to the Bucharest Endometriosis Centre, where after a gruelling surgery she finally got her diagnosis.

This surgery confirmed that as well as having pelvic endometriosis, Fisayo had diaphragmatic and thoracic endometriosis impacting her lungs. Thoracic endometriosis, often thought of as rare, is estimated to impact one to 12% of patients diagnosed with pelvic endometriosis.

Fisayo explained: “My main symptoms of thoracic diaphragmatic endometriosis is chest pain. Pain when I breathe, when I take a deep breath. I still have that to an extent. The shortness of breath, I'm always gasping, I'm out of breath because I feel like even when I breathe my nose, I'm not getting enough air and I have the pain, the shoulder pain.”

She had complained about these symptoms before, after noticing that they often correlated with her cycle, but was misdiagnosed as having asthma and started to use an inhaler, however it started to feel like it made the symptoms worse, not better.

Fisayo added: “I kept saying that, and then I got the crazy look of, oh, I'm sure it's just anxiety, or maybe you're just panicking and your heart is racing. And then gradually I started noticing that every time I coughed up mucus, I'd see blood in it.”

In 2023, she again travelled outside of the UK, this time to India to have surgery for her thoracic endometriosis and estimates that she and her husband have paid upwards of £100,000 for her surgeries.

“It is wrecking, because who has that amount of money lying around?” Fisayo said.

“Nobody does but when you're at the point of death you think ‘I could actually die if I don't get intervention’, then you know you've got to borrow, you've got to spend your last penny.”

‘If they see it maybe they’ll take it seriously’

Speaking about what inspired her to make the documentary Walking Through Walls, Fisayo said: “I see people talking about how terrible the disease is, and I said okay, we're talking about this disease, how bad it is, but I don't think any people actually know the severity.

“And then I looked through my gallery and I realized I have so many photos, so many videos. What if we show people, not just tell them? Seeing is believing you know if they see it maybe they'll take it seriously.”

Walking Through Walls will be having a virtual screening for endometriosis awareness month, taking place from March 29 to March 31. Tickets are available on Eventbrite as well as via Fisayo’s social media account, Endo & All.

The Endo the Battle campaign is being spearheaded by health writer Sarah McCann - read her endometriosis story.

If you have been affected by the content of this article or suspect you may have endometriosis you can find out more about the signs and symptoms at the Menstrual Health Project.