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Privacy Notice Endometriosis affects 176 million people worldwide, with one in 10 women of reproductive age in the UK suffering from the condition. In recent years, celebrities such as Molly-Mae Hague, Sophie Kasaei and Emma Bunton have opened up about their own diagnoses. “Endometriosis is a disease where cells similar to those lining the womb grow elsewhere in the body. Normally that’s within the pelvic cavity,” says Emma Cox, CEO at Endometriosis UK. “Symptoms of endometriosis include chronic pelvic pain, severe pain that interferes with your day-to-day life, bowel and uterine problems, painful sex and difficulty getting pregnant.” But endometriosis isn’t just found within the pelvic cavity. It’s believed that up to 12% of those with pelvic endometriosis may, in fact, have it elsewhere in the body, according to the British Society For Gynaecological Endoscopy and the Royal College Of Obstetricians And Gynaecologists.
Endometriosis is a condition that isn’t just found within the pelvic cavity
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“Thoracic endometriosis on the diaphragm, within the thoracic cavity or around/in the lungs is the most common form of endometriosis outside of the pelvic cavity,” says Emma. “It behaves in the same way that endometriosis does, which is it reacts to the monthly hormone cycle. The endometriosis cells will sort of swell and shed, but there’s no exit point for them.” While Emma stresses the condition is “not massively common” among the general population, with estimates suggesting that around 180,000 people in the UK suffer from endometriosis outside the pelvic cavity, awareness is crucial. “It’s about making sure people are aware of symptoms,” she says. “If you’re coughing up blood every now and then, that’s scary. But you’re not going to think, ‘I better keep a record of this and see if it links with my menstrual cycle,’ because who would think that?” So, with that in mind, here are five things to know about thoracic endometriosis…
Thoracic endometriosis can cause symptoms such as coughing up blood
(Image: GETTY)
Symptoms With thoracic endometriosis affecting the chest cavity, symptoms can range from breathing problems to chest pain. “Some of the more common symptoms are things like right shoulder pain because there’s a nerve in your diaphragm that it affects,” says Emma. “It can also cause a cough, shortness of breath and chest pain. On occasion, people may cough up blood on a cyclical basis, not on a permanent basis. However, endometriosis symptoms can overlap with other things.” Causes It’s unclear what exactly causes thoracic and pelvic endometriosis, although several theories have been suggested. “One of the issues is the lack of research,” Emma says. But, that being said, people who have thoracic endometriosis will also have it in their pelvic cavity. “It’s believed it doesn’t affect anyone who doesn’t already have pelvic endometriosis. It’s not something you’d get alone,” she adds. Diagnosis “A diagnosis on average takes eight years to get,” says Emma. “But if you haven’t got that diagnosis and start experiencing symptoms of thoracic endometriosis, you won’t think there’s a link.” Hemant Vakharia, consultant gynaecologist and advanced laparoscopic surgeon at London Gynaecology adds, “Imaging can be in the form of a chest X-ray, CT scan or MRI but it can be difficult to identify in some cases.”
It can take several years to be diagnosed with thoracic endometriosis
(Image: GETTY)
Complications If left untreated, serious complications can occur. “It can cause a pneumothorax, which is where air escapes into the space between the lungs and the chest wall, or a haemothorax, which is where blood accumulates in the space between the lungs and the chest wall,” says Mr Vakharia. Understandably, this can be worrying for those living with the condition. Emma adds, “It can be really scary because often when people are being seen, endometriosis isn’t considered as a possibility because it’s pigeonholed as a gynaecological condition.” Treatment As there is no cure, help such as hormone treatment and surgery aim to ease symptoms. “In some patients the endometriotic lesions can be cut out and the areas affected repaired,” says Mr Vakharia. “The tissue will be sent to the laboratory to confirm it has features consistent with endometriosis. Medical therapies similar to those used in pelvic endometriosis may be used. These can help improve symptoms.” Endometriosis UK is the leading UK charity championing the rights and needs of those with endometriosis. See endometriosis-uk.org/support A decade of distress before a diagnosis After nine years of symptoms, Nadine Lewis, 37, from London, was diagnosed with thoracic endometriosis.
Nadine Lewis was diagnosed with thoracic endometriosis in 2019
(Image: Nadine Lewis)
“I was diagnosed with stage four endometriosis in 2007, but I started experiencing respiratory problems in 2010. I didn’t realise it was related. Then in the summer of 2012, I was rushed to hospital due to chest pain. While there, a litre of fluid was drained from my lungs and I was diagnosed with a right pneumothorax. It took another seven years to get diagnosed with thoracic endometriosis. For years, mainly around the time of my period, I would get a gurgling sensation around my diaphragm. It would feel like air or some kind of food was passing through. I remember telling a gynaecologist that I thought that the endometriosis could have spread to my chest but was met with laughter. In December 2019 I was admitted to hospital for a right side haemothorax, where blood collects in the cavity between your lungs and your rib cage. I underwent a range of treatments which confirmed that I had thoracic endometriosis. I was relieved, but frustrated it took so long to receive a diagnosis. I’ve since had a second surgery but, because there’s no cure, there will be more. There are nodules on my left lung, so it’s likely the endometriosis has moved across. for the most part it’s under control, but I still have symptoms. The other day I felt what I describe as a wave crashing on my upper body. If I could say anything to people experiencing similar symptoms, I’d say what you are experiencing is real. document what you’re feeling and don’t give up. Thoracic endometriosis is real – and it affects lots of us.” Keep up with Nadine’s experience on Instagram at @nadinendoivfStory SavedYou can find this story in My Bookmarks.Or by navigating to the user icon in the top right.Follow OK! MagazineFacebookTwitterCommentMore OnHealth
