I thought I’d hurt myself at the gym — but I’ve got endometriosis in my chest

‘Every time I think I’ve got it under control, it throws me another challenge,’ says Jen Pickering, 39, of her unusual health diagnosis.

In late 2023, Jen, from Liverpool, felt a sudden pain near her shoulder blade, and assumed she’d pulled a muscle while stretching in the gym.

But countless tests revealed a shocking diagnosis: her right lung had collapsed.

It marked the beginning of a long and painful journey, until Jen was finally diagnosed with thoracic endometriosis.

While endometriosis is more well known as a reproductive condition, thoracic endometriosis is a complex form of the disease, when tissue, similar to that found in the lining of the uterus, grows in and around the chest cavity, most commonly on the diaphragm, and also in the lung.

A spokesperson from the Endometriosis Trust told Metro: ‘Thoracic endometriosis is a stark reminder that endometriosis is a whole-body disease that can affect multiple organs. For too long, many have suffered because their symptoms didn’t fit the textbook version of the illness.’

After experiencing the severe chest pain in 2023, Jess went straight to her GP. ‘I had such a disturbing “barking” type cough that they said an X-ray may be useful,’ she Jen.

‘I had the X-ray that same week, and they could see pretty quickly that I had a collapsed lung.’

At the time, medics thought this had happened ‘spontaneously.’ But after surgery, Jen’s lung kept collapsing.

‘By lung collapse five, I knew it was more than just “spontaneous”.

‘So, I did my own research, as did my consultant, and together we decided that a specialist at a hospital in Oxford would be useful in providing insight into my case.

‘Within five minutes of talking with this specialist, he advised that I almost definitely had thoracic endometriosis.’

Jen said she’d never heard of the disease, but adds: ‘When I was diagnosed, I wasn’t surprised.’

She continues: ‘It was bittersweet; a relief having an explanation yet being stuck with a disease I desperately didn’t want.’

Jen has since had multiple surgeries, and says her health journey has been ‘brutal’.

She’s also developed harlequin syndrome, a rare nerve condition that causes one side of the face to flush and sweat while the other remains pale and cold.

‘When I exercise, my right arm, the side I had surgery on, goes icy cold and covered in goosebumps, even when I’m sweating everywhere else. Sometimes it tingles so badly I can’t use it for hours. It’s so strange, but it’s just another side effect of what endometriosis and surgery have done to my body.’

Jen’s diagnosis means her lung collapses almost perfectly in sync with her menstrual cycle, a condition known as catamenial pneumothorax. In total, this happened a staggering 16 times.

She says: ‘After five or so lung collapses, my doctors and I were pretty sure it was going to continue monthly.’

‘It’s often within a few days of my period starting. My doctors told me the endometriosis on my diaphragm and lungs reacts to hormonal changes, which causes the collapses,’ she explains.

However, a recent operation has ‘put an end to the lung collapses, for now,’ she says.

‘The most recent thoracic surgery included taking down the lung from scratch, reinflating it, and sticking it in place with medical talc to hold it upright.’

Despite her ongoing health struggles, Jen has become an advocate for endometriosis awareness. Recently, she was invited to present to a global medical company about thoracic endometriosis, a rare opportunity for a patient.

‘They don’t normally have patients speak on their education days, so it was such an honour,’ she says.

‘I wanted to make sure they understood that thoracic endometriosis doesn’t look the same for everyone. Not every patient needs lung surgery or has collapses, the symptoms can vary massively.

‘It’s often described as rare, but really, it’s just rarely recognised. It’s not that it doesn’t happen, it’s that doctors aren’t trained to look for it.’

Jen also posts on her TikTok page, @‌mycollapsedlung in the hopes of sharing her story and connecting with other people who have experienced her condition.

In particular, she’s encourage women to track their symptoms, especially pain that starts within 72 hours before menstruation and continues through it, or pain that radiates from the chest to the neck or down the arm.

‘Endometriosis is relentless,’ she says. ‘But I’m not giving up. My lung might collapse every month, but my spirit hasn’t.’

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