Endo the Battle: 'Thoracic endometriosis made me feel like I was drowning - I was told I had asthma'

Endometriosis charities and organisations are rallying together to raise awareness of a lesser-known, yet debilitating form of the disease.

Thoracic endo is a type of endometriosis that affects the lungs and diaphragm. Often thought of as rare, it is the most common extra pelvic site for endometriosis, with an estimated one to 12% of patients with pelvic disease also having thoracic endo.

Many patients with thoracic endometriosis end up spending years without a proper diagnosis. But for those living with endometriosis from underrepresented communities, this can take even longer.

Filmmaker Fisayo Thompson knows this experience only too well. Her documentary Walking Through Walls recalls her experience trying to get an endometriosis diagnosis and finding out she had thoracic endometriosis, despite previously being diagnosed with asthma.

Fisayo told us: “I have this feeling of drowning, like I have fluids in my lungs. I used to say that over and over again, but got dismissed.

“I'd go to the hospital complaining. I had the pelvic pain, but I said, something's wrong with my chest. I have this pain in my chest and I have shortness of breath. I always have to wait to catch my breath, and then I got the constant misdiagnosis of asthma.

“When I did my research and from seeing other advocates and surgeons online, I found out that yes, there is such a thing as thoracic diaphragmatic endometriosis.”

Fisayo was eventually diagnosed with thoracic endometriosis after travelling from London to the Bucharest Endometriosis Centre in Romania in 2022 and had further surgery for thoracic endometriosis in India in 2023.

Neelam Heera-Shergill, of charity Cysters, is one of the campaigners calling for more awareness of thoracic disease.

She said: “Too often, those from underrepresented communities are overlooked in healthcare conversations, leading to delayed diagnoses, inadequate support, and continued disparities.

“Through awareness campaigns like this, we are not only shedding light on conditions like thoracic endometriosis but also empowering those affected to advocate for their health.”

What is thoracic endometriosis?

Thoracic endometriosis is when endometriosis tissue is found on the lungs or chest, this can either be on the surface, which is called superficial endometriosis or can infiltrate the chest cavity which is called deep infiltrating endometriosis.

An estimated one to 12% of patients with pelvic endometriosis also have thoracic disease. However, it is often misdiagnosed which can lead to delays in diagnosis and treatment.

Jodie Hughes, the founder of Endometriosis South Coast, told us more awareness of the condition across the healthcare sector was vital.

She said: “We are committed to educating the public and healthcare professionals about thoracic endometriosis and the impact it has on the lives of those who suffer from it.”

What are the symptoms of thoracic endometriosis?

Symptoms of thoracic endometriosis can be easily confused with other respiratory conditions, they can include:

• chest pain
• shortness of breath
• pneumothorax (lung collapse)

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 Endometriosis Foundation.