Developing a care pathway to diagnose and treat thoracic endometriosis would be a “vital first step” to support those with this condition, the charity Endometriosis UK says today.
Endometriosis UK is backing a joint statement made today (Tuesday 11 January 2022) by the British Society for Gynaecological Endoscopy (BSGE) and the Royal College of Obstetricians and Gynaecologists (RCOG), which calls for centralised, multidisciplinary centres to be set up to care for those with thoracic endometriosis.
The two bodies say that centralising care across the UK “can improve clinical outcomes by allowing higher caseloads within a few specific units leading to greater experience and acquisition of expertise”.
It follows a survey of BSGE members, who are specialist endometriosis surgeons, which revealed that more than a third had never managed a patient with symptomatic thoracic endometriosis, and concluded that screening for the condition is poor. There is currently no pathway to support diagnosis, treatment and support of thoracic endometriosis in the UK – despite the large numbers who may be affected.
What is thoracic endometriosis?
Endometriosis is a disease where cells similar to those found in the lining of the womb grow elsewhere in the body, affecting 10% of women and those assigned female at birth from puberty to menopause – that’s 1.5 million in the UK – although the impact may be felt for life.
Whilst the majority of endometriosis is found within the pelvic cavity, up to 12% of those with endometriosis may have it elsewhere in the body, according to the BSGE/RCOG statement. This is most commonly within the chest cavity, including lungs and diaphragm, and is referred to as thoracic endometriosis.
Thoracic endometriosis acts like the lining of the womb, each month with the menstrual cycle it builds up and then sheds, and can result in chest pain, and sometimes coughing up blood, lung collapse, or blood found in the chest cavity – and these unpleasant, scary symptoms may go undiagnosed for many years.
‘I waited 20 years to get diagnosed’
Lindsey Frame, a volunteer for Endometriosis UK in her 40s, was diagnosed with thoracic endometriosis after two decades of symptoms. She says her periods had been painful from when they started in 1991, but she was dismissed for year and told that this was ‘normal’.
Lindsey says: “It wasn’t until 2009 that I received an official diagnosis of endometriosis via a laparoscopy, following previous surgeries and scans. 11 years later in 2020, I was also officially diagnosed with thoracic endometriosis. This has followed years of ending up in A&E regularly, and being misdiagnosed with asthma. I have seen various specialists over the years, but it took over 20 to be seen by the right one and get the thoracic endometriosis diagnosis that I had been waiting for. It is terrifying to think what damage is done to your body during this time without the right course of treatment”
Emma Cox, CEO of Endometriosis UK, says: “Thoracic endometriosis is likely to affect well over 100,000 women and those assigned female at birth in the UK, and can severely disrupt all aspects of their work, social and family life. Yet at present there is no guidance in the NHS about how to diagnose and treat thoracic endometriosis.
“Today’s statement by BSGE and RCOG should be welcomed as a vital first step for those affected by thoracic endometriosis – not least because it reassures that group that medical professionals take their symptoms seriously. If specialist care can be put in place, it could be transformative and life-enhancing for those who suffer from thoracic endometriosis, and their families.
“We’re committed to working closely with both bodies to continue to make the case to Governments and the NHS across the UK to make this happen. It’s great to see the Scottish Government already progressing this by committing to develop pathways for endometriosis outside the pelvis in their Women’s Health Plan, and Endometriosis UK calls on all other Governments in the UK to do the same.
“We also call on NICE to review their guideline on endometriosis (NG73) to include endometriosis outside the pelvic cavity, which it currently excludes.”
Coughing up blood and lung collapses
Natalie Wood, a member of Endometriosis UK’s York support group, also has thoracic endometriosis. She says: “I started having lung collapses in 2018, and so far I’ve had five. I’m now recovering from a second surgery which I hope will ease the symptoms – because of thoracic endometriosis I’ve had pain in my upper abdomen, ribs, back and arms, and shortness of breath – some days it feels like I’m breathing in soup it is so hard to get air in.”
As the BSGE/RCOG statement notes, a centralised care approach would be in line with the aims of the Department of Health UK Strategy for Rare Diseases. It would also meet the call made by the All-Party Parliamentary Group on Endometriosis in 2020 for the creation and implementation of pathways for care for those with endometriosis outside the pelvis, starting with thoracic endometriosis.