Eleanor's lung collapsed at the start of every period: Then she discovered she ... trends now
Each month, Eleanor Kisby would develop a niggling sensation that grew to be a sharp pain in her right shoulder — and soon after she would find herself struggling to breathe.
It happened not once or twice but nine months in a row, and was severe enough that sometimes 36-year-old Eleanor needed up to two weeks off work as the pain, coupled with shortness of breath and extreme fatigue, made it a struggle to move.
‘The first time it happened I thought I’d just pulled a muscle, but the pain became more and more severe,’ says Eleanor, an ICU research nurse, who lives in London.
‘I got on my bike and started cycling home, but couldn’t take a deep breath because it hurt too much, so I had to walk a lot of the way.
‘Back home, I tried to stretch out my shoulder blade and took painkillers, but nothing helped. I thought I might be overreacting and left it.’
She did an ultrasound scan on her own lungs while at work, which revealed fluid around her right lung. A subsequent X-ray in A&E revealed she actually had a collapsed lung.
In the absence of other symptoms, the doctor advised Eleanor just to see how things developed, but a month later her right lung collapsed again.
She cut back on strenuous activities to see if that helped, but found that even gentle yoga, or putting on her pyjamas at night, could provoke a recurrence of her symptoms.
Each month, Eleanor Kisby would develop a niggling sensation that grew to be a sharp pain in her right shoulder — and soon after she would find herself struggling to breathe
Crucially, this always coincided with the beginning of her period, leading Eleanor to wonder if the two might be connected.
She’d recently been diagnosed with endometriosis — a painful condition where tissue similar to that which forms the lining of the uterus develops outside it, causing symptoms such as nausea and severe cramping every month.
She was, it turned out, correct: the pain and breathlessness Eleanor was experiencing were linked to the endometriosis.
The condition, which affects 1.5 million women of reproductive age in the UK, typically affects the pelvic area but the tissue can also form in the lungs, heart and elsewhere — in Eleanor’s case, it was growing in her diaphragm and lung lining — known as extra-pelvic endometriosis.
Extra-pelvic endometriosis affects one in ten women already diagnosed with pelvic endometriosis, while a smaller proportion of women have it without having pelvic endometriosis.
Endometrial tissue elsewhere in the body behaves just like that in the womb, which is shed each month during a period, causing symptoms such as pain, fatigue, a persistent cough, coughing up blood, blood in the urine and in the faeces, an irregular heartbeat — or, as in Eleanor’s case, a collapsed lung.
A collapsed lung happens when air leaks from the lung into the space between it and the chest wall. The build-up of air pushes on the outside of the lung, so it can’t expand as much as it normally does when you inhale, causing pain and breathlessness.
Shaheen Khazali, a consultant gynaecologist and expert in advanced endometriosis surgery based at the Lister Hospital in London, explains that when endometrial tissue grows on the lung, it is thought that as the tissue is shed each month, this leaves a hole in the lung lining, which causes air to escape and the lung can collapse.
‘There are a lot of unknowns around endometriosis and extra-pelvic endometriosis in particular,’ he says. ‘But we know it can affect places such as the lungs, nerves, bladder and ureters [the tubes that carry urine from the kidneys to the bladder].’
While there was a belief that it spread like cancer, ‘what’s important to understand is that it does not spread from the pelvic area’, Mr Khazali adds. ‘We don’t actually understand how it happens, although the most likely theory is that it’s there from birth.’
It doesn’t, however, start causing symptoms until, typically, a woman reaches her mid-30s.
Diagnosing standard pelvic endometriosis takes, on average, almost eight years, according to a recent survey by Endometriosis UK — but, says Mr Khazali, it may take longer still for a diagnosis of extra-pelvic endometriosis, as it’s rarer.
A lack of awareness is key, he says, as endometriosis is as common in women as type 1 and type 2 diabetes. ‘But while everyone knows what diabetes is, they don’t know about endometriosis.’
Eleanor had had painful periods and had suffered abdominal pain since she was a teenager, but was only diagnosed with pelvic endometriosis in 2020 after going back and forth to her GP in her 20s with lower abdominal pain.
Previously, she had been told she had irritable bowel syndrome (IBS), and her GP even once asked if she suffered with anxiety, which, she admits, ‘made me feel like a bit of a hypochondriac’.
She relied on painkillers to ease monthly symptoms of abdominal pain, diarrhoea and sickness — ‘but they didn’t always work’.
Then, in March 2020, she woke two nights in a row with excruciating lower back pain.
Doubled over in agony, she could barely walk — ‘I was sweating and clammy and had to breathe really
