My experience of living with diaphragmatic endometriosis.

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).

diaphragm diagram

Who knew such a tiny organ could produce such armageddon like pain!

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.

Some of the endometriosis nodules found on my diaphragm.

Some of the endometriosis nodules found on my diaphragm.

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.

Where I experience pain from my diaphragmatic endometriosis.

Where I experience pain from my diaphragmatic endometriosis.

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.

Fairly sure this is my future, much heat pad abuse is going on daily.

Fairly sure this is my future, much heat pad abuse is going on.

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?

Love,
Claire
xx

129 thoughts on “My experience of living with diaphragmatic endometriosis.

  1. Hi, how are things going for you now Claire?
    I’ve suffered from.a number of gynaecological problems , endometriosis being one.
    I’ve also charted and suffered excruciating shoulder, neck and rib pain before and during period.
    I always thought it was muscle pain from gym workouts. But when I stopped gym and pains have gotten worse. Was on ‘charting’ that I realised the link.
    I’m yet to be diagnosed with diaphragmatic endometriosis and seems, little heard of in UK.

    Do yo knw if a dull hysterectomy cures this? Because with endo, no periods or ovaries to produce hormones, hysterectomy should stop lesions elsewhere, bleeding. As no monthly cycle.
    Thanks

    Like

    • Hi Sarah,
      Thanks for getting in touch. Really sorry to hear what you’ve been going through.
      Yes diaphragmatic endo is a tricky one unfortunately. Easier to get diagnosis for it than treatment in the UK I think.
      I wouldn’t say that hysterectomy would be a cure for it- it only cures adenomyosis. If all of a woman’s endometriosis is excised at the same time as she has a full hysterectomy this can produce really positive outcomes for patients I believe.
      Hope this helps. Happy to chat more about this if you want to. My email address is endomyworld@gmail.com
      Best wishes,
      Claire
      x

      Like

  2. Hi Claire,

    Thank you so much for writing about your experiences with endometriosis. I myself believe I may have diaphragmatic endometriosis. For years now I have complained of shoulder and neck pain, weakness in my arms and hands. I have been to osteopaths, physiotherapists, acupuncture, doctors, had massages but none of this works. Before I get my period the pain really flares up- last night I woke up screaming and crying in pain as my partner tried to massage me back to sleep but it was just too painful. I am off to another (lets be honest, pointless) doctors appointment this afternoon. I have had a laparoscopy in 2015 and was diagnosed with endometriosis, however the after care and follow up is dreadful. I still feel lost and feel a lack of control in terms of dealing with this disease. My fear is that no one believes me or understands the pain I am in on a regular basis. Everyday I live with a heat pack on my shoulder and neck, and pain killers to try and deal with the pain but these don’t really work- I am in pain just typing this now, as I feel a general weakness in my arms and hands. I am going to see if I can get a referral to a specialist today, and hopefully start getting some answers. I do get painful periods, however for me it is the neck, shoulder and arm pain that I find most debilitating. I noticed that this was a few years ago that you wrote this blog- but I wanted you to know that I appreciate it and that it was helpful.
    Thanks,
    Emily

    Like

    • HI Emily,
      Thanks for getting in touch, I am pleased you found my post helpful.
      Really sorry to hear about what you’ve been going through- I know its really tough. I hope the specialist is able to provide some helpful advice and assist you to get to the bottom of things.
      Take care and please do keep in touch.
      Best wishes,
      Claire
      x

      Like

  3. Hi Claire,
    I sat here reading this in tears because I could have written this. I’ve been treated for a heart attack, had 2 unnecessary stents placed, 4 MRI’s, CT Scans, Nuclear Body Scans, worn a heart monitor for a month and still have no diagnosis. The pain is so severe that my BP has reached 290/110. The only difference is it is my left side. I haven’t slept laying down in 6 months and have developed a sore on my bottom. Bless you for sharing this. I am refocusing my search for a doctor who will pursue this. I would love to k ow how you are feeling now. 🤗

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    • Hi,
      Thanks for getting in touch. Glad my post could help in some small way. Really sorry to hear what you’ve been going through though- know how tough it is. Keep me posted on your progress and please do keep in touch.
      Almost two years on from surgery and I am still doing well pain wise 🙂
      Take care,
      Claire
      x

      Like

  4. Omgsh your like a heaven sent angel! I have been sick for 6 years with pain finally feb of 2017 I did a laparoscopy nd was told my endometriosis didn’t look like endometriosis but was cut and sent to the labs and was tested positive for endo. I have also had back and rt shoulder pain. I changed my pillows got a new bed. I take naproxen twice a day and mix with ibp 800 in betweeen the naproxen. So I’m hurting. I decided to look up endo and shoulder pain and found your article. And it was a blessing. I have a dr apt tomorrow and at least now I can suggest what I found out by reading your story. This is my 3 opinion with a gyno I have seen over 20 different dr .i have asked to have them go back in and re check me and reopen me cuz I know something else is wrong. Wish me luck that this dr will do the hysterectomy.

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  5. I believe I have diaphragm endo. I was diagnosed with severe endo on my ovaries and Fallopian tubes years ago and had some treatment for this. For years I’ve had pain in my back, neck and shoulders around menstruation and this causes terrible migraines. I’ve had four Pneumothorax, this is when the lung collapses. I looked into this myself and found that there was a connection although rare. I’ve mentioned this to different Doctors but never been taken seriously so never had a proper diagnosis. I just carry on treating myself with painkillers and migraine tablets. I’m 45 years old now and keep thinking once menstruation ends I won’t have to put up with this pain anymore

    Like

    • Hi Lisa,
      Thanks for getting in touch. Gosh, really sorry to hear what you’ve been through- sounds awful. Also sorry and frustrated to hear your experiences of not being listened to by your medical team, I know that frustration only too well.
      Look after yourself and keep in touch.
      Claire
      x

      Like

  6. Hi Claire,
    I have not been diagnosed with diaphragmatic endometriosis, but I’ve been researching my symptoms and it sounds exactly like what I’ve been experiencing for years. Your article was extremely helpful to me, because I feel like no one believes or understands me when I explain what I’m going through! For me, I first remember having the pain in my left shoulder when I was a teenager, but I thought it was related to playing sports. Over the years the pain has become more frequent and a lot more painful, in both my left and right shoulder, and my neck, the pain radiates down my arms. I can’t sleep at night because I wake up in so much pain, when it’s really severe I can’t drive myself anywhere because I can’t even lift my arms to turn the steering wheel. It feels like a deep muscle ache and when I move my arms it feels like it’s ripping. I have headaches everyday because of the almost constant pain in my neck. Ive tried talking to my doctor before but it was just brushed off. It’s so frustrating! I noticed it was hormone related about 4 years ago, the pain gets worse a week or 2 before I start my period and last usually a week after my period. When I was pregnant with my 3rd daughter it was horrible. After I had her, I had a tubal ligation and I regret that so bad. My hormones have been all over the place and I believe that has caused these symptoms to flare up! I have an appointment set up with a gyno, I really hope they will listen to me and figure out what is going on!

    Like

    • Hi Alicia,
      Thanks for getting in touch. I’m pleased my post was able to help a little bit, although I am really sorry to hear what you’ve been going through.
      How was your gyno appointment? Any progress made?
      Take care and keep in touch.
      Claire
      x

      Like

  7. So I have costochondritis. Could this actually be my endometriosis spreading.. I swear I had in my lungs too when I was hospitalized a few years back. I am having a flare up in my rib cage and it always bothers me on the bottom tips of my ribs. I had surgery for endo in 2003 and they said it was spread all over my bladder as well. Now to find out if this is really what it is. Thank you for posting Claire

    Like

  8. Hi I realise this was written a while ago, but very recently I have been suffering a pain in my shoulder and neck it hurts all the time and I have seen described at a stitch like feeling in neck/shoulder and collar bone, (which is how I would also describe the pain) but it seems to only really be a problem at this point for the first few days of my period. Did you suffer more around your time of the month? I don’t really like going to the doctors especially if I feel I won’t be taken seriously and saying I get a pain in my shoulder and neck from my period seems like they will think I’m nuts! Any thoughts would be great
    Suzanne.

    Like

    • Hi Suzanne,
      Thanks for getting in touch. Yes my diaphragmatic symptoms are at their worst just before an during my period. I recommend keeping a symptoms diary for a couple of months and taking this to your doctor to discuss. It can really help to highlight patterns clearly. I don’t think they’ll think you’re nuts with this- certainly worth investigating if you’re concerned.
      Keep in touch, and let me know how you get on.
      Claire
      x

      Like

  9. What type of doctor diagnosed and treated your diaphragmatic endometriosis. I’m worried that my OB could miss it if it’s not solely in my reproductive tract.

    Like

    • Hi Morgan.
      A gynecologist diagnosed me during a laparoscopy. You can discuss your concerns with your OB and ask them to check your diaphragm during surgery. Also ask them to check behind the liver as the liver obscures some of the diaphragm, meaning some can be missed.
      Hope this makes sense. Good luck!
      Claire

      Like

  10. Do you have the lower endo pains as well? Severe pelvic lain, leg/thigh, lower back?
    Thats where the majority of my pain is. I have been living w it for a very long time and am having a partial hysterectomy in Sept. however in the past year, infact right at almost a year ago i went and saw my gp because i was having chest pains and finding it really hard to breath after my work outs SUDDENLY and i train in mixed martial arts several times a week but after a really hard class i cough tk the point of almost throwing up. Cheat pains, jaw and shoulder hurt, theg ran every heart test they could took chest xrays all were normal so i was given an inhaler for exercise induced asthma. Im curious if i am experiencing beginning symptoms of endo of the diaphragm. Thoughts? Can my gyno see my diaphragm and lungs during my laproscopic and exploratory surgery during my partial in September? Thanks so much for your article.

    Like

  11. Claire,
    So thankful I found your article. I am 32 and had a complete hysterectomy at 26 years old bc of endometriosis on my liver and I ended up having internal bleeding bc I ignored my symptoms far too long. I have been on hormone replacement therapy for several
    Years doing the patch. It works ok but a year ago I had to have a diagnostic lap for upper right abdominal pain and severe right should pain with no known injury. I went to my normal on gyn dr whom scoped my pelvis only didn’t check my diaphragm. They surgery helped a tad but not a lot well it has been a year and this terrible dibilitating pain is back in my right humerus that feels like a knife jabbing my mid arm.
    Most people think that bc I have had my ovaries removed that I can’t get endometriosis but evidently hormone therapy can cause it to grow as well. I am nervous to call a de but I know in my mind what it likely
    Is again. I however plan to call a de in a larger city this time. That specializes in this.

    Like

    • Hi Amanda,
      Thanks for getting in touch- really pleased my blog has been helpful.
      Gosh you’ve been through so much, keep looking after yourself. Wishing you so much luck for the future, and keep me posted on how you’re getting on.
      Claire
      xx

      Like

  12. Hello my name is Joy located in NYC. I suspect i have thoracic endo. I been goimg to Er monthly for 3 yra. Pain im the same exact places on your diagram diaplay. Been misdiagnosed and not taken seriously. I was juat diagnosed with the sister disease of adenomyosis. Feel so alone. My periods are dreadful

    Like

  13. I can’t thank you enough for sharing this. You put everything that I’ve been feeling into words and I am so grateful. As an endo sufferer since the age of 12 and now that I’m 29, it’s hard to make doctors understand what it’s like. I’ve been diagnosed with endo in my uterus, bladder, gums and rectum. Now I’ve been fighting to get a doctor to listen about my diaphragmatic endo. I wish you the best with everything and know that you helped me tremendously. *virtual hug*

    Like

    • Hi Tasha,
      Thanks for your lovely message. I’m so glad to help in some small way.
      It sounds like you’ve been through a lot- look after yourself.
      Do keep in touch and do email me if you need to chat further.
      Best wishes,
      Claire
      x

      Like

  14. Hi there,

    I’m Emma 31 from Auckland New Zealand. So happy I found this post! I have suffered Right shoulder pain, chest pain stabbing in left side of back and lots of other symptoms I believe I have chest endo but they haven’t found it. They did see a few spots on my liver that were left during laparoscopic surgery, and picked up by ct scan. I have suffered for 12+ years no answers. The only time I have had no symptoms was while I was pregnant with both my pregnancies. So sorry u have been through this. Did u have any other strange symptoms? My heart is in arrhythmia they don’t know why and I also have blood noses throughout the month. The pain is connected to my nervous system but when I’m pregnant I’m fine. This is just such a nasty disease! Hope they find a cure soon. Emma.

    Like

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