Thoracic endometriosis: What happens when endometriosis spreads to your lungs?
Endometriosis is known as a disease which causes uterine lining or endometrial tissue to grow outside the uterus. According to the Endometriosis UK charity, ‘endometriosis is most commonly found on the lining of the pelvis (peritoneum) and may occur in the ovaries and involve other pelvic organs, like the bowel or bladder’.
It is commonly associated with painful and heavy periods, but while general awareness of endometriosis has improved there are rarer aspects of the condition that don’t get nearly enough attention. The thing about endometriosis is, it’s so common yet it’s woefully under-researched (shocker) and is often dismissed by the healthcare professionals whose job it is to diagnose and treat it.
How can something that affects 1 in 10 women take, on average, nine years to diagnose? The mind truly boggles, and no matter how much I write about it (see my articles for Glamour and Refinery29) or conditionals like it (see my article on adenomyosis for Glamour) this never fails to surprise me.
What is thoracic endometriosis?
Anywho — apologies for getting side tracked and allow me to re-focus my attention to the topic of this post which is thoracic endometriosis. It’s a rare form of the disease where the endometrial tissue is found in the chest cavity which can include the lungs.
I first learned about thoracic endometriosis when I interviewed a lovely woman called Nadine Lewis for this article. I remember how stunned I was to hear Nadine describing physically being unable to move out of bed one morning, having to be carried out of her home by paramedics and having fluid drained from her lungs at the hospital.
The Royal College of Obstetricians and Gynaecologists (RCOG) says that, ‘The thorax or chest represents the most common site for endometriosis outside the pelvis with 85% of cases in the right hemi-thorax and around 80% of these cases associated with pelvic endometriosis’.
RCOG also states that there is a ‘lack of widespread experience of managing TE amongst endometriosis specialists’ and that while the prevalence of this form of endometriosis is unknown, it’s possible that it is underdiagnosed.
Catamenial pneumothorax
Catamenial pneumothorax is the most common form of thoracic endometriosis, making up 73% of all cases. It happens when ‘you get air in the space between your lungs and the inside of your chest around the time of your period’. It can cause chest pain, difficulty breathing lung collapse.
What are the symptoms of thoracic endometriosis?
As with any medical condition symptoms will vary from person to person, but thoracic endometriosis symptoms can include:
trouble breathing
chest pains
right shoulder pain
lung nodules
lung collapse
coughing up blood during menstruation
What does thoracic endometriosis feel like?
I wanted to see what women with thoracic endometriosis experience symptom-wise, so I had a look online and here’s some of what I found.
Someone standing on my chest
“I have the heavy feeling in my chest all the time. But whenever I am having a flare up , I have the feeling of someone standing on my chest, pain in my shoulder tip and shooting pains up my neck , even up to my ears when I yawn or breath deep and trouble breathing. these symptoms are much worse when I bend down, and I know it sounds silly, but these symptoms are worse then all other pains, the pains actually give me the feeling of depression and anxiety, they actually make me feel tearful and sad.”
Thinking about suicide
“The middle of my chest would burn, i felt as though there was someone pushing down on my chest and it was hard to breathe. I was constantly tired, short of breath and any type of strenuous activity made me winded. The nerve pain on the right side of my body was becoming so unbearable and became so depressed. I kept thinking about suicide because i really couldn't imagine living years like the way i had been. Plus, i was dealing with pelvic pain too, it was unrelenting.”
Pain never fully stops
“I have Stage IV endo and had a laparoscopy a couple of years ago and the surgeon confirmed that there was “deeply infiltrating” endo on my diaphragm. He removed as much as possible and though the pain didn’t fully go away, it was so much better. I remember the pain as being so much worse at night-painkillers would help but never fully stop the pain… For me the biggest sign was shoulder pain.”
Like breathing in broken glass
“The pain is a mixture of a stitch under your ribs like you have been running too hard with a burning/stinging sensation. When the pain flared it felt like I was breathing in broken glass. I thought I had broken ribs.”
Being stabbed with a rusty knife
“I was rendered immobile on my bathroom floor due to shooting pains underneath my right breast and near my ribs. It felt like someone was stabbing me with a long rusty knife every time I took a breath. The only relief I found was to simply wait it out in bed, but I barely made it that far.”
Prioritising thoracic endometriosis care
Acknowledging the lack of research and working knowledge of thoracic endometriosis among healthcare professionals, the RCOG and the British Society for Gynaecological Endoscopy (BSGE) have pledged to ‘centralise thoracic endometriosis care’. In a 2022 joint statement, they said:
“We believe that centralising the care of women with TE can improve clinical outcomes by allowing higher caseloads within a few specific units leading to greater experience and acquisition of expertise. Women with TE will benefit from better co-ordination of multidisciplinary care within specialist centres across the UK. Such an approach is in keeping with the aims of the Department of Health UK Strategy for Rare Diseases (3), enabling more accurate and timely diagnosis, and the potential for improved treatment outcomes. Concentrating care in this way can also facilitate research into the disease prevalence alongside the safety, effectiveness, and long-term prognosis of treatments.”
I haven’t been able to find an update on any tangible outcomes for these plans to establish a national pathway for the management of thoracic endometriosis. I will, however, be keeping an eye out for any news, so here’s hoping that improvements are actually made for the benefit of those living with the condition.