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

179 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. 🤗

    Like

    • 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

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  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

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  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

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  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

    • Hi.Amanda
      Why have I only just found this website, probably too late for this conversation but it’s worth a go as my journey sounds just like yours.
      I got diagnosed with diaphragm endo whilst on holiday in USA 2005 when my right lung collapsed. I was being treated for rheumatism in my right shoulder in England. For 10 years The Gynacologist put me on different treatments, contraception pills, Depro Vera etc and I had major surgery 3 more times for pneumothorax. 4 years ago I had my ovaries removed and because I was only 45 I was told to take HRT for bone density. 6 months ago the pharmacies didn’t stock my HRT pill so I changed and since then all my symptoms have returned; right shoulder pain, upper right arm weakness, feeling like being punched in upper right back. It scares me! I don’t want another lung collapse! Being 50 I now can opt to stop HRT but the doctor hasn’t mentioned that and it’s 2 months till my Gynae appointment.
      How is your journey since writing this comment??
      Kelly

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  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

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  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.

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  15. Claire! How is life post-op? I’m having my 3rd laparoscopy in 2 weeks because I, too, suffer from all the symptoms of having endo on my diaphragm. My first 2 surgeries, they never checked anywhere outside of my pelvic region, and I’ve been suffering from shoulder pain for 3+ years… Just seeing if your surgery was a success and your symptoms cleared up?

    Like

    • Hi,
      Thanks for getting in touch and best of luck with your surgery! 2.5 years on all is (relatively well). I do experience some ‘twinges’ in my shoulder but they are very rare these days and mild when they occur.
      Please do let me know how you get on!
      Best wishes,
      Claire

      Like

  16. I AM SOOOOO RELIEVED TO FIND YOUR INFORMATION!!!!!!!
    I had a hysterectomy December 7th of 2015, had severe complications, and wasn’t taken off a ventilator until New Years Day of 2016. Ever since this I have felt AGONIZING pain in my shoulder, neck, and back. After doing 2 cat scans and 3 MRIs, in the span of about 7 weeks, the doctors came up with NOTHING!!! then I came across your article, and realized it is the exact description of the pain I’ve been having. It is now October of 2017 and my doctor has discovered that I too have what you had. If it had not been for your information, I don’t know that I would have ever found out what was going on. Thank you so so so so so much. I truly believe that YOU changed my quality of life. Thank you do very much again!!

    Like

    • Hi. Can i ask? What they are going to do for your diaphramatic endometriosis please?
      If youve had a full hysterectomy. Does that not stop the endo bleeding each month?

      It sounds like youve been through allot already.

      I myself feel i have diaphramatic endometriosis, as have had severe shoulder pain etc.
      I have had numerous gynae diseases and rheumatoid arthritis to name but afew 🙄

      Thanks sarah

      Like

  17. Hi! Thankyou for sharing this!

    I have not had any ‘formal’ endo diagnosis, but my endo pelvic symptoms have been there ever since I got my period, and now my shoulder pain! – My gynae has suspected endo for a while, but since there are no specialists here in Malta, getting a lap or treatment isn’t so easy.

    I’ve been having the most horrible shoulder and neck pain (right side) with every period I get (I’m on Birth Control) for over a year, but lately they’ve been getting worse and worse. For about a week every month, I cry my eyes out, take an over dose of pain killers and anti inflammatory meds, cannot lay down or breathe well. There are about 2 days in which I feel I can not take the pain any longer. Nothing helps.

    I am travelling to see Mr Chris Mann in Birmingham, and hopefully get a laparoscopy soon. I am quite concerned about the recovery, (since I have to get a 3h flight back home) and as you said, there is not much info out there. How long did it take for you to be able to function after surgery? I’m also very worried I might have to get a hysterectomy, but I guess there is nothing I can do about it if there is the need for it.

    Thanks again for sharing!
    Samaryah (20 years old)

    Like

    • Hi Samaryah,
      Thanks for getting in touch. I’m pleased you found my post helpful.
      I’ve heard such good things about Chris Mann, fingers crossed he’s going to help you feel much better.
      Do keep me posted on how you get on.
      Claire

      Like

  18. Hi Claire,
    Many thanks for your informative post. Around 5 years ago I was diagnosed with 3 thumbnail sized pieces of endometriosis down the back of my womb which was lazered.
    In the last few years (especially since my som was born). I’ve struggled with severe indigestion and struggled with certain foods. Like you ive sought help from alternative therapies and my osteopath says my diaphragm is my most sensitive area and that is where she has to focus on most. I never heard of endometriosis and I was just wondering if you experienced the horrendous indigestion like I have which is like the burping you have after the laparoscopy.
    I also wondered if anyone has been misdiagnosed as having crohns disease and it was actually endo as my friend has recently discovered she has endo on her bowel but now wonders if her previous diagnosis of chrons still stands. Many thanks Megan

    Like

  19. Hi Claire

    Great to read your comments/information. My partner has just been diagnosed with the exact same condition as yourself and …. as you say …. it’s very difficult to get ‘real life’ info. Would you suggest using the pill as a short-term pain relief? She has also been told that invasive surgery would be required to (hopefully) remove the endometriosis but she is a bit a bit worried about going through with it…. what is the recovery time after the operation that you had? I think her biggest worry is that we have 3 year old twins and she feels she needs to be able to be active for their benefit. Any suggestions would be great.

    Many thanks

    Mr Lee Bullen

    Like

    • Hi Lee.
      Thanks for getting in touch. Really sorry to hear what your partner has been going through, I know how difficult it is.
      I really recommend the Endometriosis UK website as an excellent source of information.
      I have found the pill useful for symptom control in the past but it is a band aid/ short term solution at best. Excision surgery is the key to the most full recovery possible. Recovery from the surgery depends on how much is removed and where from. General guidance is to have around 3 weeks off work but you’re usually up on your feet within a day or two and just have to take things as easily as possible.
      It depends how bad your partners symptoms are and what her goals are with regards to pain and fertility which road she decides to take really.
      Hope this helps, but do feel free to email me if you’d like to discuss further.
      Best wishes,
      Claire
      x

      Like

  20. I have been having terrible shoulder pain for years. Over the last few months I’ve been logging my right should pain… big surprise my pain in the worst the first day of my cycle. I stumbled upon your article after googling referred should pain during period. I could have written this article… I am not sure where to go from here. I am going to see my gynecologist as soon as possible. But for tonight I’m heading to my heating pad! Thank you for writing this! I’m not crazy! My pain may actually be caused by this!

    Like

  21. Claire,

    Thank you for sharing your experience with endometriosis. I have had debilitating shoulder and neck pain since I was 26. I am now 41. In 2011 I had a tiny bit of tissue coming out of my belly button that would hurt once in awhile around my period My OBGYN sent me to a surgeon who said it was a hernia. I did my research and told him I thought it was endometriosis and he looked at me like I had five heads. After the surgery to remove the hernia, he approached me while I was still drugged and on the recovery table and told me that I was right. He explained that after the made the incision to remove the hernia the endometrium fluid was spilling everywhere. He called it abdominal wall endometriosis.

    My right shoulder pain has been a mystery. In 2013 a very small benign tumor (osteoid oseoma) was discovered on my right clavicle and I had it removed, but apparently that was not the reason for my pain. I continue to have debilitating shoulder pain and the flare-ups last for weeks. The pain varies. Sometimes my clavicle bone really hurts and the pain moves down my upper arm. Other times it’s the clavicle neck and back.

    Compounding the right shoulder pain, I also get gastro intestinal type of problems that cause severe stomach pains and bloating. I have been hospitalized and spent many nights at hospitals with severe bloating and stomach pains since my 20s. Now the stomach pain is so severe that I cannot take any medication for the shoulder pain because it seems to aggravate the stomach problem even more. I also get very painful periods and the consequence of taking any kind of medication for the cramps are that the gastrointestinal pain and bloating are really bad after my period ends and the meds wear off. Does anyone else experience stomach and gastrointestinal issues that they think are related to the endometriosis?

    Thank you,
    Jocy

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  22. Hi Jocy,

    I’m so sorry you’ve suffered so much and have had no proper answers from doctors. If they confirmed endometriosis in your abdominal wall I don’t understand why they aren’t investigating further for your bloating and digestive issues and even your shoulder. I had stage 4 severe endo throughout my pelvis – fusing my bowel and uterus together and wrapping around my bladder and both ureters to the point it was damaging my kidneys. I had horrific bowel / digestive symptoms that have mostly cleared up since my surgery with Chris Mann, an endo excision specialist last year. I was also diagnosed with endo on my diaphragm, which explains my shoulder and neck pain, and I’m still trying to work out the best way to treat this. I also suffer form adenomyosis, which is endo inside the muscular wall of the womb, which causes bad bloating, heavy bleeding and sometimes puts pressure on the bladder and bowel. I would recommend joining the facebook group called Nancy’s Nook endometriosis education and the UK Endometriosis Revisited Group, as well as the Thoracic Endometriosis / Lung Endometriosis Group. It helps to do your research and these groups all have great information, support and a lost of good doctors to see in the UK. Good luck with it all x

    Like

    • Finally after years of pain I am due to have an hysterectomy and surgery for the endometriosis. Like yourself I am stage 4 with bowel and bladder complications. At my last appointment I asked the consultant whether anything had showed up on the laparoscopy or MRI in the diaphragm area but they had not checked despite having asked specifically as I also suffer with the same symptoms in shoulders, lungs etc. alongside hemiplegic migraine which is a nightmare at times. I’m 47 been under the hospital for over ten years and under my GP for twenty plus years with the pain and symptoms described in the other emails got a diagnosis six months ago. My advice to all you young girls out there who are displaying symptoms don’t be fobbed off. I have been diagnosed with cysts every place in the womb area you can imagine, fibroids, varicose veins on my bladder, the list goes on. Trust your instincts and if you don’t get results ask to see another gynaecologist. There are too many of us left to suffer for too long.

      Like

    • Hi isa, have they done anything for your diaphragm? I have diaphragm endo which has caused a hole and now my liver has herniated through the hole and I have no idea how they will treat it

      Like

  23. Hi Claire
    Reading your post has made me realise my diaphragmic endometriosis has came back with an avengence. I was diagnosed in 2011 but found taking the combined pill continually with no breaks kept it at bay, 2 years ago I decided to try coming off the pill due to other reasons, Altjough concerned and worried it may affect my endometriosis. Month by month it was ok and eventually after a year I got a period and no still no sign of pain. My period came and went and after blood tests I was diagnosed with Peri-menopause. Last week I had a really irritated pain in my right shoulder which eventually went into my neck thinking I had done it through weight training I have had a therapeutic massage. I could hardly move my neck and pain was becoming worse and really getting me down. I am taking 30/500 cocodimol but not making any difference, it’s affecting my sleep. I have realised the pain in my neck is radiating from my right shoulder and thinking OH NO this is the endometriosis coming back. I am thinking there is no choice but to go back onto the combined pill. Which I now fear I will be on for the rest of my life.

    Like

  24. Hello there!
    I was diagnosed with endometriosis when I was 12 years old and have since had two laparoscopic procedures and many, many forms of contraceptives in order to keep the symptoms at bay. In the past 1-1.5 years I’ve had terrible right back and shoulder pain that radiates in my neck and down my arm. In October of last year, I started getting horrible right upper quadrant pain. I have literally gone through every test you can think of to find out what was going on. I never linked any of this to endometriosis, until I couldn’t think of anything else. That’s when I found out about diaphragmatic endometriosis. Honestly, I’m still reeling. I have a specialist I’ve been seeing, but he’s booked out months, so even though I’m undiagnosed, I have hope that maybe, just maybe there is an answer for this pain that I’ve been going through for over a year now. Maybe, there is a way to treat it because I’m at my wits end. Your article has given me hope and something to bring up to my doctors. Here’s hoping someone will listen!

    Like

  25. Hi Claire – I am wondering if you have experienced or heard of anyone who suffers from what feels like a lump in the throat as a result of diaphragm endo? Last month I had a pneumothorax 48 hours before my cycle. This month an x-ray ruled out pneumothorax but I am still feeling a lot of pain in my back and neck – but mostly a weird sensation that I have a lump in my throat – like swallowing a big pill that got stuck.

    Like

    • I have this same feeling, almost like I swallowed a loaf of bread. I’ve also been experiencing right rib/back pain for almost a year. I have went through ultrasounds, CT Scans and MRI, they all come back clear except a 9mm nodule in the left lung. I’m very frustrated! I had a hysterectomy in 2010 due to pelvic endo. Really wondering if this is what’s going on with me.

      Like

  26. I’m having pulling pain on my shoulder blade andnthought could it be endo. Mine feels like breaking up scar tissue the pulling feeling. Are there any test for it?

    Like

  27. Hi,
    I had a hysterectomy in 2008 for endo, my uterus and left ovary was taken. For the past 9 months I’ve been experiencing pain in my right thoracic area/rib area. I have had several test done CT, ultrasound ,Mri,etc. All come back clear except a nodule in the left lung. I have found this article and I’m very curious if this could be the pain I’m experiencing. I do not sleep in the bed at night instead reclined on the sofa, it’s uncomfortable to take a deep breath and so on.

    Like

  28. Hi Sarah.
    Thanks so much for this I got diagnosed 4 years ago with endo on my diaphragm liver and kidney. My gyneo told me i needed to deal with the pain. yeah because thats easy! Not many drs in the UK have heard of this. Just been told by another Dr that the only thing left for me is early menopause and with the rate mine is spreading he said it could fuse my organs together!! to say the least Im petrified what if early menopause doesnt work.

    Please could some tell me what has worked for them??

    Like

    • Hi Jade,

      I was told after failed surgery on my liver, lung and diaphragm that early menopause or getting pregnant were my only options. So I did 6 months on Zoladex to put me into chemical menopause then went into IVF to get pregnant. We did 6 rounds of IVF with each failed round followed up with daily injections of Lucrin to put me back into menopause so my endo didn’t spread. We finally got pregnant and he’s now 7 months old and I’m still breastfeeding and pumping to trick my body into thinking I’m still exclusively breastfeeding (which can stop endo growing). I’ve now been pain free for 16 months and have the added bonus of a beautiful son.

      Getting pregnant isn’t for everyone or even an option for some people but if you are close to this stage of your life and it is an option, I couldn’t recommend it enough.

      Chemical menopause has its side effects and certainly wasn’t my favourite thing in the world but I was pain free the whole time I was on Zoladex and Lucrin. Lucrin was my preferred drug (even though it was daily injections vs a monthly implant) it just seemed to have less side effects for me personally.

      I wish you so much luck in finding something that helps you x

      Like

  29. I been living with this horrible disease for 14 years. I just found a doctor that even heard of dia. Endo. I’m in so much pain right now I gotta stop. But if you have any info on how i can atleast make my doctor listen to me or even look into it that’ll be great. My lungs are starting to collapse i cant breath in sometimes. This pain will make you feel like giving up. I can’t though. My email is talisathomas93@gmail.com

    Like

  30. Hi Claire,

    I can’t thank you enough for sharing your experience. Being that it is so “rare” there isn’t much to read about it. I just had a laparoscopy done and confirmed I had endometriosis and a large endometrioma on my right ovary. My surgeon was not an endo specialist so he told me that he wasn’t able to look up that far on my diaphragm. I have had right upper back/shoulder, rib pain for 6 months. I have had multiple ultrasounds done to see if it is my gallbladder and it is fine. I am wondering if I could have endo on diaphragm. The only thing is my pain is constant and doesn’t fluctuate with my period. I am so frustrated and tired of being passed off into another doctor. I have read that MRI could possibly show endo on diaphragm so I am trying to find a doc that will order one. 😒

    Like

  31. Hi there,
    I’m stumbling across this site as I update on research and others’ experiences. I’m 36 y.o. I had my first major Endo surgery at age 24. I had a partial hysterectomy and had a chocolate filled cyst removed the size of a 6 month pregnancy. Since then I took Lupron, then Depo- Provera to stop periods . I took a break from birth control for 2 years before my Endo spread to my thoracic region causing about 10 lung collapses and procedures (several chest tubes, 2 pleurodesis / pleurectomies). I went back on birth control to catch my next period and stop it. My surgery was successful in 2014, and birth control helped stopped he collapses. About 5 years later symptoms returned (chest pain, pulling / stabbing sensations as if my lung wants to collapse, but it is attached to my rib cage to prevent that, yet still painful, some new symptoms on left side, but predominantly still right sided, have shortness of breath, back/neck/shoulder pain ). And, overall fatigue and body pain. All these symptoms happen on and off monthly or every other month. I am back on Lupron to try, before thinking of another surgery. I have to go to urgent care of ER for help breathing and to rule out lung collapses. Toradol, Naproxyn, and steroid injections have helped. When my pain and breathing issues are severe , morphine is added in addition to the anti inflammatory IVs or injections. It’s tough to choose myself between work or self care. My management is abusive often yelling for doctor notes, at times I’d rather push myself into work, but out of my control , I end up at ED (from work).

    I extend love, healing, and support. Although there is no cure at this times, I find it helpful to hold on to those symptom free days where I appreciate and affirm perfect health in those moments. Prayer and mindfulness have helped me go with the flow and manage stress of it all.

    Stay strong Endo warriors . God is with you .

    Like

  32. oh my goodness!
    this has helped so much, it’s made me feel like i’m not an absolute loony! i have suffered so much over the past 12 years (i started my periods when i was 10) i am now 22 and in the past year i have spent a total of 18 weeks in hospital and had 4 laparoscopy and they removed the endometriosis near my bowls and bladder, however the pain in my shoulder and neck is still agonising and i feel that i can’t cope! i have lost so many jobs in the past year and st the moment i am currently fighting for employment support allowance as i haven’t paid my rent in 3 months – no one will employ me due to my last employers bad reference (well, not bad.. but mentioning the amount of time i have had off) i am losing my mind and to be honest, i have attempted to take my life 4 times this year. if there is anymore advice you could give, on endometriosis in the diaphragm or even recieving money due to not working that would massively help. i really don’t know what to do.

    all my love,

    charlotte aka the struggling 22 year old 😩😩😩 xxxxxxx

    Like

  33. HI,
    it was so helpful this article… I have all these symptoms for 2 years, and now,first time, i believe that i have the solution. My gyno told me to take avercap for 3 months, and if my pain stops then we ll go to lapascopy. Are these inj. safe???

    Like

  34. Hi Claire,
    I am so relieved to see your page.I am in so much pain @ the minute Rt Shoulder pain is unreal .Last night I cried the whole night -even after taking strong pain killers anti-anti-imflammatories and heat cream .I have been to my doctor countless times with this.I googled my symptoms and explained it to her .I think she taught I was nuts @ first but she now realizes how bad I am. She has referred me to a gyne but here in Ireland it takes 14 mths to see one and if I go private could cost thousands.If you have any information that could make my life easier it would be great as it is really starting to bring me down😩😢😭

    Thanks
    Eileen

    Like

  35. Clair,
    Thank you for your post. I was diagnosed in 2009 and had adhesions removed in my pelvic area during a Lap. The last two years I have felt symptoms returning, gradually getting worse. Some of the new symptoms I haven’t been able to describe, other than “it feels like the gas pain (in my neck and arm) like when I had the lap done.” I am sorry you were hurting, but I was relieved to read your account, and relate! Two nights before my last period I had excruciating pain around my ribs and diaphragm. I thought I might have been having a panic attack, or perhaps my lung was collapsing. I had no idea that endo in the diaphragm could cause this pain. My doctor appointment is in April for my annual. Do you have any other words of advice that I could take with me to my appointment?
    Thank you again. Crystal

    Like

  36. Did you have chest pain as well? I had robotic gyno Surgery for a uterus defect and wondering if what I’m experiencing now could be diaghpragm endo. I have tightness in my chest and upper back, neck and shoulder pain.
    Ive never been told i have endo but Could diaghpragm endo come as a result of laparoscopic surgery?

    Like

  37. Hi Claire,
    I am living with a serve diagnoses of endo from my diaphragm, abdo wall, bladder, rectum and uterus. I have had a mri scan and it ant come back very good news.
    I am going to see my consultant on Tuesday reg it all and one off it is surgery… having to have a sigoscopy first to see how far it is in my rectum ad they couldn’t see it all on the mri plus after that they have said have to think about the diaphragm surgery.
    I have been through alot in the last few years with my health and ops but this one am really scared off.
    Any help? Any tips?
    Thanks Katie xx

    Like

  38. Some months ago my diaphragmatic pain flared up again, by accident I tried “Maximum Strength Aspercream with Lidocaine”. Applying it twice a day across the lower back and up to the neck for 3 days stopped the headaches, neck, and breathing pain. I’ve been using the cream (which is available in CVS and most supermarkets) for a few cycles and seems to be working.

    For my severe endo related menstrual pain I am taking a serotonin supplement (5-HTP 100 mg once a day). There is a lot of research linking endo to lowered serotonin level which is linked a lowered pain threshold. What a change, her pain became much more manageable.

    I am not sure why my doctor don’t tell my about this. I want to pass what we found in case others suffering like us can find some relief.

    Like

  39. Hi Claire,
    So nice to find a voice in the darkness ; ) which it seems is where most of us feel we are when stumbling upon this lovely piece. Sorry to hear so many ladies struggling but it is nice to find real information and validation sometimes.I don’t have an absolute confirmation of thoracic/diaphragmatic endometriosis but we will be looking into it during my laproscopy in 3 weeks. I have a little different story as I had a hysterectomy 11 years ago with a unilateral oopherectomy, then the other out less than a year later because of severe endometriosis.(diagnosed@26hyster@30) We tried to leave one ovary because I was 30 but I had nothing but reoccurring rupturing endometriomas on the ovary the whole time. I did many suppression treatments before the hysterectectomy & several laps. The drugs were awful especially Lupron, it made my migraines very bad but all of them really were an emotional rollercoastrer, very difficult. I was lucky enough to have already had children but we did not want more. I didn’t know anything at the time & I only had my regular OBGYN do the surgeries and they were not excisional . Also working against me, without HRT I had such severe menopausal symptoms I have to use it, so unfortunately I’ve been dealing with issues ever since to varying degrees including, left shoulder pain, chest/rib pain,and severe neck pain as well as lower abdominal /back pain. I had a mass in the low abdomen 3 years ago they were going to remove but it disappeared int he wks between the CT scan and the MRI, deciding it was a cyst that ruptured, explains the pain. I have been sort of in the middle doctors not knowing what to do with me because I’ve had a hysterectomy so the endo clinic didn’t want me but the general surgeon didn’t want me because they didn’t deal with eno…. Thankfully a Nancy’s Nook approved surgeon arrived back in MI and believes that he can help me!!!! I am nervous but hopeful thus the soliloquy here. I have felt nearly completely disabled for years sharing the feelings of depression, in the fact that at times just the basics of life feel like a marathon if I can manage to do them at all driving , making dinner, running a swiffer through the house….Besides spending years and thousands $$$ trying to feel better with the gambit of diagnosis Fibromyalgia, low thyroid , & chronic migraines costocochodritis, shoulder strain, neuritis etc. I do very simple elder care which I refuse to give up but I don’t have to do much other than be kind, simple care, & sit with my clients now, it’s crazy that seems too much. My greatest hope is that they start to have a better understanding of this & it doesn’t cost so much money to get help for something doctors don’t seem to understand ravaging our whole bodies. Best to everyone ♡

    Like

  40. Ok. So I googled ‘period’ and ‘neck pain’ thinking there’s NO way these could be related and I somehow end up here totally surprised and extremely grateful.
    In short, I’m 40, have never had any out of the ordinary issues with periods or my pregnancies, actually fit the ‘low risk’ category for endometriosis and the first ever time I’ve considered this a possibility was tonight.
    6 months ago I experienced excruciating pain in my neck around the right carotid artery. Shooting pain when I moved, hurt when laughing, crying or even breathing. No position was comfortable. Thought it was a nerve pain or maybe even heart related. Lasted for a few days then went. Then after a few weeks came again. And went. Again. After a particularly painful episode where I consider calling an ambulance I went to the osteopath who told me I’d sprained my top rib (due to poor posture most probably, which I felt was more likely than anything else as I am extremely unathletic). Went through osteopathic treatment, failed to fully do my exercises and so embarrassed I didn’t go back. And then it happened again. I thought it was because I didn’t do my exercises and so wasn’t strong enough. But I noticed it happened at the time of my period. And went away again in a few days. Excruciating. How could they be related? After 6 months I’ve finally figured that is happens at the onset of my periods. Sometimes just briefly, sometimes it’s longer. But always then. Which makes no sense if it is an unhealed sprain.
    So tonight, I googled. I simply cannot believe these two things can be related but I am so grateful that I found this site at what is perhaps the beginning of something that I need to be prepared for. I thought endometriosis was something you either always had or you didn’t. Had no idea it could begin at my age after no symptoms. Will know what to ask for if I want a proper diagnosis. In the meantime bless you and all those who are going through this. Knowing what it is is half the battle. You’ve already made a huge difference. Thank you!

    Like

    • Hi Nonny,
      I’m so sorry that you are going through this! I, too, didn’t think pain in my shoulder could be related to my period until I started tracking exactly when the pain would begin. I went to my personal family doctor and told her my symptoms and what I thought could be happening, diaphragmetic endometriosis. She sent me to an regular OBGYN that had never heard of anything like this and decided to not take my case on. So, on to the next specialist which was a urogynocologist. She HAD heard of this before but knew that it was rare, especially because I had (and still don’t have) any of the pelvic symptoms. After a few trips to the ER because of the excruciating pain and LOTS of imagining later, it was discovered that I had a small spot of endo on my liver. When my period would begin, the spot would also bleed, swelling and pushing against pain nerves that would send referred pain up to my right shoulder. So so weird, right?!
      I had surgery to remove that small spot on my liver but when they went in to rotate my liver (for easier access), my diaphragm tore due to the endo making everything “sticky” in there. It was a long recovery but that was in 2016. I am now fully healed and have no more pain or any other symptoms of endo.
      My greatest advice to you is to keep pushing your doctors, be your own biggest advocate! I pray that they are able to figure this out for you and relieve you of the pain.

      Like

    • Hi nonny,
      This is so familiar. I just googled pms and neck and shoulder pain, and wound up here. The past three menstrual cycles I have had horrible upper neck and upper back/ shoulder pain in the five or so days before my period. Also thinking there’s no way the two are related, but that’s the only time I have the pain! And with the first day of my period it vanishes. I have no horrible associated pelvic pain. Just the normal cramps, but it’s the neck pain and shoulder pain that’s awful.
      I’m 41 and have had three pregnancies, never diagnosed with Endo ever! Is it possible to have this diaphragmatic endo without pelvic endo?

      Like

      • From the little I know I think it is, but apparently this diaphragmatic form of endo is quite rare – which is why docs don’t always properly diagnose.
        Just had a terrible 2 days (interestingly one month after my last comment) so off to the doctor I go, even at the risk of misdiagnosis. Something has to change!

        Like

  41. My name is Talisa Thomas. I’ve been having this for over 15 years. Been through so many doctors only for them to get upset with me and they think I’m crazy and trying to do their job eventually they tell me they can’t do anything for me. They claim the disease is so rare I couldn’t possibly have it. My endometriosis has attacked my diaphragm for 15 years and now has spreaded to my sciatica nerve witch causes terrible pain in my butt and hip area. Im in a terrible flare up right now can’t hardly breath I need help. No one will help me. I been sitting up in my bed since 1am in unbearable pain. Ive taken too many ibuprofen 600. My symptoms: start 2-3 days before my period pain on my right upper chest shoulder neck area. It hurt to breathe in (inhale) my breathes are cut shortwhen I try to breathe in. Rubbing or massaging the are makes it worse I cant touch the area. Also my hip hurts at the exact same time as my right chest area. It’s like clockwork every month for years. It worsen as years go by. Its unbearable. My son is 14 years old. When I got pregnant with him I didn’t have not one symptom of this till he was 4 months old. I felt so healthy and new during my pregnancy. But the moment my body realized it wasn’t pregnant anymore there it was back. I need any help you can give me. It’s spreaded to my sciatica nerve and it’s hard to walk. I fall down sometimes.

    Like

    • Where are you based? I only know of a handful of specialists who can diagnose this. Mr Khazali in Surrey, Mr Cutner at UCLH in London. I paid £290 for a private consultation, then they requested my GP referred me to them on the NHS. It really needs to be a true specialist otherwise they are incapable of giving a diagnosis. Also, join the Facebook group Nancy’s Nook – it’s a god send and full of information. If you search thoracic endometriosis in that group it’ll give info and direct you to another Facebook group set up especially for women with this disease. Good luck to you x

      Like

    • Talisa- when I can not breathe due to Endo in my lungs and thoracic area I go to the ER. I encourage you to do so. They’ll rule out a collapse.. that’s number one. Then they can give you steroid, toradol, naproxen, of some sort in injection form. This is fastest to reduce inflammation and pain that affects our breathing.

      I’ve had about 10 surgeries… chest tubes, pleurectomies and all that. I had to get back on Lupron to shrink any growths before considering more surgeries (that cause more scarring and pain) .

      God bless you. Go ASAP! Many doctors do not know! It’s okay to teach them !

      Tari

      Like

  42. This is Talisa I left out I this past January I had laparoscopic surgery where they removed the endometriosis out of my uterus area. Doctor claimed she looked at my diaphragm during the surgery. I told her you can’t see the legions from my stomach she has to go down through my shoulder and neck area.

    Like

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