My lung collapses every month - perfectly timed with my menstrual cycle

A Liverpool woman suffers from life-threatening lung collapse every single month, perfectly timed with her menstrual cycle.

Jennifer Pickering, 39, led an active lifestyle until September 2023 when she thought she was suffering from a pulled shoulder blade. An x-ray confirmed her right lung had collapsed and since then the same lung has collapsed once a month.

Doctors have ‘informally’ diagnosed her with thoracic endometriosis - a rare form of endometriosis causes tissue similar to uterine-lining to grow inside or around the lungs. While some people will not performance any symptoms, the majority will experience a collapsed lung within the first few days of each period and in some cases, it can be deadly.

According to the National Institutes of Health (NIH), around 6-10% of reproductive age women affected by endometriosis, and 12% of those have tissue outside of their reproductive organs.

A former pilates teacher from Liverpool, Jennifer said the condition has ‘taken my whole life’ and described the treatment as ‘incredibly painful’. Previously very active and a lover of travelling, she has had to stop going to the gym and hiking, stop going to watch the football and was also banned from getting on a plane due to the pressure change.

Discussing her health journey, the 39-year-old said she was ‘cooling down’ after a light gym workout in September last year when she noticed something wasn’t right. Having completed some yoga stretches, Jennifer moved into ‘pigeon pose’ - a position which involves stretching the right leg forward and left leg back - when she felt something ‘tear’ in her right shoulder blade.

“It was like somebody had stabbed me in the back, it was very painful,” she said. “I was a bit like, ‘what on earth is going on?’. I immediately left the gym - just thinking I’d pulled my shoulder.”

Two days later, after realising the pain hadn’t gone away, Jennifer decided to drive herself to the Royal Liverpool University Hospital. A shoulder scan showed her right lung had spontaneously collapsed and she’d need to see a lung specialist to get it re-inflated.

After undergoing surgery and spending six weeks consulting with the lung specialist, Jennifer believed it ‘probably’ wouldn’t happen again but, just a month later, her lung collapsed for a second time.

“It happened a second time in October 2023,” Jennifer said. “I was kept on the respiratory ward in the Royal for a week, until the first week of November.”

For the first time, Jennifer began to think her lung collapses could be linked to her menstrual cycle - but doctors dismissed this at first, as she hadn’t been diagnosed with pelvic endometriosis. She also hadn’t experienced any of the symptoms of pelvic endometriosis - like heavy periods and pelvic pain.

In November, Jennifer was referred for video-assisted thoracoscopic surgery (VATS) - which involves a tiny camera and surgical tools being inserted into the chest - to treat her lung collapse, and spent ‘months’ in recovery.

She said: “During post-op, they have to give you something called a chest drain. It drains any excessive fluid or air - which, if not drained, could be really dangerous for the heart. They’re very painful, it’s very hard to sleep with them in - it literally feels like a foreign body inside your chest.

“Beyond that, you’ve got to be very cautious for the first three to eight months - you’re given quite a detailed recovery programme. It says stuff like you can’t hoover until you’re 12 weeks in or pick up a child until 10 weeks in.”

After spending two months in recovery, Jennifer’s lung collapsed for the third time, in January 2024. After January, her right lung collapsed on a monthly basis. - two days before the start of each menstrual cycle. “I sat down and worked it out - it was 26 days apart, every time,” she explained. “I was really suspicious that it did have something to do with my cycle.”

In April 2024, Jennifer was re-diagnosed with cyclical lung collapse. She was sent to a radiologist who had experience diagnosing thoracic endometriosis - and an MRI revealed she has ‘nodules’ around her chest cavity.

A sample has been sent for a biopsy - and Jennifer is still waiting for the results, but has been told by doctors it’s ‘more than likely’ to be endometrial tissue. If she is officially diagnosed with thoracic endometriosis, she may be prescribed the contraceptive pill to help, as well as following a strict, healthy lifestyle.

In the meantime, Jennifer has started raising money in order to fund a thoracic endometriosis training day for doctors. Discussing her endometriosis theory initially being dismissed, Jennifer said: “I don't see this as a failing of the doctors, more a failure in training.”