Thoracic Endometriosis training for medical professionals

Did you know that Endometriosis can affect pretty much anywhere in the body?

Evidence already tells us that approximately 10-15% of women have Endometriosis. The little research that does exist, suggests that perhaps around 1% of women have Endometriosis outside of the pelvis.

Yet why are so few doctors trained to know about this?

Why in the UK does it take an average of 7 years to get a diagnosis for Endometriosis?

I am arranging a training event in April 2025, primarily for health professionals, to increase their knowledge of Thoracic Endometriosis.

There are next to no doctors in the north of England specialising in treatment of Thoracic Endometriosis. Whilst this is thought of as a rare condition, specialist Thoracic Endometriosis doctors are asking "is it actually that rare, or are we just rarely diagnosing it?"

My story is below.

My name is Jen and I have Thoracic Endometriosis. My right lung collapsed for the first time in September 2023, seemingly spontaneously. I had no history of Endometriosis, although I did have other conditions such as IBS and chronic hip & sciatic issues which may have been Endometriosis misdiagnosed.

My right lung continued to collapse monthly, 2 days before my period started. Endometriosis was originally dismissed due to me having no diagnosis of Endometriosis in my pelvis.

Doctors had no answers as to why my lung was collapsing each month.

I had major surgery (VATS) after the third lung collapse; my thoracic team were amazingly supportive (and continue to be!). They are experts in all things cardio-thoracics, but not experts in Endometriosis.

Less than 2 months post surgery, my right lung started to collapse again, and I was back to the recurring monthly lung collapse. I have had chest drain procedures, chest aspirations, multiple stays in hospitals and more scans than I can remember.

Living with it has been life changing. I stopped my job teaching Pilates, I stopped going to the gym, I stopped hiking, I stopped paddle boarding and stopped going to Anfield. I was also banned from getting on a plane due to the pressure change so I have been unable to travel since mid 2023.

I had a second major operation in August 2024, with a different Thoracic surgery team who specialise in Endometriosis. Unfortunately this was 4 hours from home due there being no specialist team in northern England.

What I would like to achieve by fundraising:

To facilitate a training day on Thoracic Endometriosis that provides knowledge relevant to a host of specialities within medicine.

The event is taking place in Liverpool on 28th April 2025.

Specialist doctors are presenting a series of talks to target: thoracic surgery and surgical implications for patients, imaging of Endometriosis in the chest cavity, respiratory roles within Thoracic Endometriosis, GPs, nurses, gynaecologists and beyond. Endometriosis charities will also be presenting some of their work.

I hope that doctors and other health professionals can utilise this knowledge to support Endometriosis more effectively in the future for other women.