A Liverpool woman has shared her terrifying experience of suffering a collapsed lung every time she has her period, in what doctors believe is a rare form of endometriosis.
Jennifer Pickering, 39, led an active lifestyle until September 2023, when she believed she had injured her shoulder blade at the gym.
But after two days of pain, an X-ray revealed that his right lung had collapsed.
Since then, the former pilates teacher has suffered a collapsed lung once a month, coinciding perfectly with her menstrual cycle.
While she doesn’t have an official diagnosis, doctors have “informally” said she has thoracic endometriosis, a rare form of the reproductive condition in which tissue from the uterus spreads to other parts of the body.
Jennifer Pickering, 39, who led an active lifestyle until September 2023, when she believed she had injured her shoulder blade at the gym.
After suffering pain for two days, an X-ray revealed her right lung had collapsed. Since then, the former pilates teacher, from Liverpool, has suffered a collapsed lung once a month, in perfect sync with her menstrual cycle.
Normally, the tissue grows in the abdominal and pelvic area, such as the bowel or bladder.
But in thoracic endometriosis (which is said to affect about one in ten women with endometriosis), the tissue grows in the chest cavity and affects the lungs.
Endometriosis affects around 1.5 million women in the UK and causes extreme pain, usually around the time of a menstrual period.
It can also cause intestinal problems, fatigue, difficulty getting pregnant, and pain when urinating.
Thoracic endometriosis behaves like the lining of the uterus: each month, with the menstrual cycle, it builds up and then sheds, according to Endometriosis UK.
It can cause chest pain, collapsed lung, sometimes those affected cough up blood or blood is found in the chest cavity.
Without treatment, the disease could be fatal.
However, for many women these symptoms go unnoticed for years, adds Endometriosis UK.
If further testing confirms Ms Pickering’s diagnosis of thoracic endometriosis, she may be prescribed the contraceptive pill to help her, in addition to following a strict, healthy lifestyle.
Ms Pickering said: ‘I feel like thoracic endometriosis has taken my whole life away.
‘I liked travelling, riding an electric scooter, going to the gym… but it’s been very, very difficult to leave it all.
“The treatment has also been incredibly painful.”
In September 2023, Ms Pickering was “cooling down” after a light workout at the gym.
She did some yoga stretches on a mat, initially focusing on her legs and glutes.
But when he moved to a certain position, he felt something “tear” at his right shoulder blade.
“It was like someone had stabbed me in the back. It was very painful,” he said.
‘I was kind of like, ‘What the hell is going on?’
“I immediately left the gym, thinking I had hurt my shoulder.”
Two days later, after realising the pain had not gone away, she decided to drive to the Royal Liverpool University Hospital to request a scan.
But the scan showed his right lung had spontaneously collapsed and he would need to see a lung specialist to have it reinflated.
After surgery, she spent six weeks consulting with the pulmonary specialist, believing it “probably” wouldn’t happen again.
Thoracic endometriosis behaves like the lining of the uterus: each month, with the menstrual cycle, it builds up and then sheds, according to Endometriosis UK.
Ms Pickering began to think her lung collapses might be related to her menstrual cycle, but doctors initially ruled this out as she had not been diagnosed with pelvic endometriosis.
“It happened a second time in October 2023,” Pickering said.
‘I was kept in the respiratory ward at the Royal Hospital for a week, until the first week of November.’
For the first time, Ms Pickering began to think her lung collapses might be related to her menstrual cycle, but doctors initially ruled this out as she had not been diagnosed with pelvic endometriosis.
I also had not experienced any of the symptoms of pelvic endometriosis, such as heavy periods and pelvic pain.
In November, she was referred for video-assisted thoracoscopic surgery (VATS), which involves inserting a small camera and surgical tools into the chest, to treat her collapsed lung, and spent “months” in recovery.
In November, she was referred for video-assisted thoracoscopic surgery (VATS), which involves inserting a small camera and surgical tools into the chest, to treat her collapsed lung, and spent “months” in recovery.
Ms Pickering spent two months in recovery, until her lung collapsed for the third time, in January 2024.
She said: ‘During the post-op, they have to put something called a chest drain in you.
‘It drains any excess fluid or air, which, if not drained, could be really dangerous for the heart.
‘They are very painful, it is very difficult to sleep with them on, it literally feels like a foreign body inside your chest.
‘Beyond that, you have to be very careful during the first three to eight months – a fairly detailed recovery programme is provided.
‘She says things like you can’t vacuum until you’re 12 weeks pregnant or hold a baby until you’re 10 weeks pregnant.’
A sample was sent for a biopsy and Ms Pickering is still waiting for the results, but doctors have told her it is “more than likely” endometrial tissue.
Ms Pickering spent two months in recovery, until her lung collapsed for the third time, in January 2024.
“After January, this continued every month,” he said.
‘I sat down and calculated it: each time there was a 26-day difference.
‘I really suspected it had something to do with my cycle.’
In April 2024, Jennifer was again diagnosed with cyclical collapsed lung.
She was referred to a radiologist who had experience diagnosing thoracic endometriosis, and an MRI revealed she has “nodules” around her chest cavity.
A sample was sent for a biopsy and Ms Pickering is still waiting for the results, but doctors have told her it is “more than likely” endometrial tissue.
Meanwhile, Ms. Pickering has begun raising money on GoFundMe in order to finance a training day on thoracic endometriosis for doctors.
“We’re in the early stages of planning right now,” he said.
‘I want to inform doctors about this condition because it is missed in many examinations.
“It would be about training radiologists on what to look for, and I hope to be able to bring my radiologists in to give a talk.”
