Ah, the diaphragm- a sheet of skeletal muscle only a quarter of an inch thick and located beneath the lungs. It plays a crucial role in facilitating the lungs to inhale and exhale (aka breathing), and in separating the thoracic cavity (containing the heart and lungs) from the abdominal cavity (containing your stomach, liver etc).
The diaphragm is a greatly under appreciated organ in my experience- like most people I’d never given mine a second thought until it was attacked by endometriosis and became extremely pissed off. From that point my diaphragm started to control my life, and let to much confusion, misdiagnoses, and experimenting with alternative therapies before we worked out what was wrong!
I was officially diagnosed with diaphragmatic endometriosis (sometimes interchangeably known as ‘thoracic endometriosis’) during my first laparoscopy in 2014. Since my entire endometriosis diagnosis came as a bit of a shock, this particular piece of information didn’t stand out as particularly alarming. At that moment I did not know (nor was I informed- thanks doc) that endometriosis in this region is extremely rare , strongly associated with severe pelvic disease, and in extreme cases may cause catamenial pneumothorax- where a lung collapses around the time of menstruation! I definitely think I’d have requested follow up sooner if I’d know this!
Conducting my own research on this topic post-surgery was a real eye opener, a massive EUREKA! moment in fact. Did you know, for example, that the shoulder/back/neck pain caused by diaphramatic endo is actually referred pain caused by irritation of the phrenic nerve? Or that the majority of cases affect the right side of the diaphram rather than the left, due to a process called embryonic patterning? Finding accurate and detailed information was not easy though, even my beloved ‘Endometriosis For Dummies’ book revealed zilch. The reading I did manage to do somewhat perpetuated my feeling of loneliness at first, as I did not meet anyone else in my support group or online for quite some time who also suffered in this way. And for me, my diaphragmatic symptoms made up a significant amount of my pain.
What was fascinating though was how many women have approached me interested in this topic, and with lots of their questions and concerns relating to it. Many suggested they could not find many personal accounts online or research to compare their own symptoms too, and suggested that many doctors had been dismissive of their concerns because the condition is rare. Because of this, I’ve decided to write this post to address the most frequent questions that I am asked, and to tell my own story in greater detail. I hope you find this helpful! 🙂
How was your diaphragmatic endometriosis diagnosed, and what exactly was found?
As mentioned above, I was diagnosed during a laparoscopic surgery in 2014. This surgery was performed by a general gynecologist not an endometriosis specialist. Two nodules, a small amount of scarring, and an endometrioma (Yes! You read that right! An endometrioma!) were found on the right side of my diaphragm. I had previously had a number of ultrasound and MRI scans on my chest area which had (very frustratingly) come back clear.
What symptoms do you experience as a result of your diaphragmatic endometriosis?
I initially began to experience right shoulder tip pain in 2012. This was a sharp sensation comparable to the oh so miserable gas pains experienced after a laparoscopy. This pain made moving my right arm very difficult.
Over time the pain spread into my back, neck, and arm, and became a daily feature of my life. I have marked the precise locations on the diagram below. Much of this pain felt muscular to me, like a deep burning pain after working out too hard. I actually began to have frequent massages (FYI- they didn’t help my pain, just to empty my bank account) as I was convinced I had just pulled a muscle in my shoulder at the gym.
You know when you have a bad bruise on your skin and you press it with your finger- the whole right hand side of my back felt like this to the touch. My GP (mis)diagnosed me with Repetitive Strain Injury (RSI) and gave me some medication for this (which again, didn’t help). When my symptoms flared up, breathing would sometimes become very difficult and something I would have to concentrate on. I also found it impossible to sleep lying down and had to prop myself up with a number of pillows or sleep on the sofa sitting up.
I cannot over-empahise how agonising diaphragmatic endometriosis has been for me. It has definitely been the worst pain I have EVER experienced. During the summer of 2013 it flared up so badly that I had to spend 3 weeks in bed as I was literally unable to move my arm, back or neck without almost passing out from pain. It was a really frightening time. As an interesting anecdotal side note, the other women I have met with this have said the same thing about how extreme the pain is, so I don’t think this is one of those cases of me being weird!
What impact has endometriosis on the diaphragm had on your quality of life?
To be completely honest, a massive and catastrophic impact. Having your right arm incapacitated on regular but random intervals made having a ‘normal’ life very challenging . Severe flare ups would often last for several weeks at a time and meant that I couldn’t drive to the office, work on my PhD on my computer, cook for myself, exercise, or socialise etc. It was around this time I started to become isolated and depression took a strong hold of me, one that still has not let go.
What treatments have you used, and how effective were they?
I found that my diaphragmatic symptoms, as with my other general endometriosis symptoms, respond well to anti-inflammatory medication and to heat. Not well enough to use drive or exercise, but enough to stop me from passing out at least. It’s the small victories we must celebrate in such hard times. Taking the combined contraceptive pill over the last year prevented any major flare ups and been a total lifesaver in many respects, but I would still get mild shoulder and back pain on some occasions.
In my most recent surgery I had the endometriosis excised from my diaphragm! It was pretty exciting for me, as I wasn’t sure if they were going to be able to remove it, as they had warned me this may have to happen in a separate surgery at a later date. I’m hoping this is going to solve my problems in this area, but will have to report back in a couple of months time. So far so good though, no symptoms to report 🙂
My doctor/consultant/surgeon won’t take my concerns about this seriously, what should I do?
I’d print out and take this paper with you, and insist on them taking your concerns seriously. Or ask for a referral to an endometriosis specialist– I’d like to hope they’d at least entertain the idea that endo can hijack the diaphragm (please feel free to correct me if I’m wrong). It is possible for surgeons to check your diaphragm during a laparoscopy if you do have concerns. You may have to ask though as not all doctors routinely check this area.
Do you have any further information about diaphragmatic endometriosis that you have found useful?
I found these two endopaedia articles (see here and here) to be an informative and accessible starting point.
So that is my story so far with diaphragmatic endometriosis. I’m frustrated that this problem, yet again, took years to sort out and involved misdiagnosis, but I am happy that I have now had the surgery that will (hopefully) solve the problem. Meeting other people with the condition, and speaking to other women about their concerns, has been so helpful in my recovery process and has taught me so much more than reading. Most of all, I have certainly come to love my diaphragm and appreciate what it does for me 🙂
Please do let me know your thoughts or if you have any other specific questions. Always interested to hear from anyone else who suffers with diaphragmatic and/or thoracic endometriosis too, do my symptoms match your own?
201 thoughts on “My experience of living with diaphragmatic endometriosis.”
I don’t have any endometriosis pain in my lower vaginal or ovary area did you have this? Do you have to have endometriosis in that lower area to have thoracic endometriosis? My area of pain is the same as yours on my back side upper thoracic and shoulder area. All across my trapezius area on my right side . Been diagnosed with slipping rib and snapping scapula but it’s a stabbing that definitely gets worse with period. time, please get back to me
Hi Jessie. I did have pelvic pain with my endometriosis too. Hope you get to the bottom of your symptoms. Definitely discuss the cyclical nature with your doctor! Good luck
Hi Jessie, mine is the same. No pain in the lower abdomen/womb/ovaries so I didn’t have any indication i may have had endo. But my lung collapsed multiple times within 6 months and I get pain now along the lower ribs both sides and stabbing in the upper apex of both lungs each month around the same time. Had ultrasound, MRIs but they’ve shown nothing so next step is to see a specialist but they’ve put me back to September. Hoping to get an answer/diagnosis soon! I hope you get some answers. I’m shocked at how little is known about diaphragmatic endometriosis. Most people here seem to have more knowledge than the doctors 😕
This is so
True . I seem
Have diagnosed myself on this . I have the exact same
Pain areas as you and similar situation wine a day in meetin the specialist .
I’m very thankful you’ve shared your experience here. Your colored-in pain spots were very helpful: I have those same areas, even up that exact line on the face!
For my story, I suddenly developed breathing problems two years ago, and none of my doctors or specialists were able to figure out anything. I was training for a marthon and was very healthy, but suddenly couldn’t walk to my car without feeling like I was going to pass out. Fast forward much misery, many doctors, and of course mis-diagnoes later, I had a lap for other issues by general gynecologist which showed stage 4 endo. He didn’t touch anything (for which I am grateful now because he turned out to be quite ignorant). I found myself a endo specialist who told me all these mysterious symptoms NO ONE could figure out were all related to endo and has me down for surgery in two weeks. I had no idea this could happen! I relate so much to the nervousness about it being in the lungs or being embedded too deep in the diaphragm. I just want this out so I can move on with my life.
Want to say a big thank you again. I hope you are doing well!
Hello, anyone has right of head pain with endometriosis
I was just surgically diagnosed with stage 4 endometriosis in June 2021, and there were a few lesions found under my liver that were described as in the “right hemidiaphragm”. I have had sharp pains in my shoulders from time to time over the years, that are similar to how you describe them, sharp and feels like shoulder gas pain post surgery. I often get this pain in my shoulder after running or intense exercise. Do you think I should see a specialist to look further into the possibility of diaphragmatic endo?
Thank you so much for this post, it has been super informative for me.
I wanted to know if you can update us on how you are feeling? I am also experiencing the same symptoms as you and looking for excision surgery
Hi Claire i would love an update please – Gyno believes i may have thoracic endo ive just started birth control and go back in April but its the same time each month (Ovulation and Period) with chest and rib pain and a cough. Not fun times at all.
Anyone has right side of head pain with endometriosis.