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

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

  1. Happily endometriosis on my diaphragm was ruled out, but my whole diaphragm wasn’t checked (my pains on left side not typical right) so there’s still a little doubt in my mind.

    I just thought I’d let you know about a Facebook group called “Thoracic Endometriosis/Lung endo group” that have been very helpful to me. Occasionally scary reading, but practical help from patients and consultants that was the only really detailed help when I needed it.

    Liked by 1 person

    • Hi Michelle,
      Thanks for this comment. I’m going to check out the Facebook Group now, sounds really useful!
      I think some of the diaphragm stuff can be pretty weird- I sometimes get left shoulder/back/neck pain even though the left side of my diaphragm is clear. At least you’re aware of and knowledgeable your symptoms and pretty on top of things.
      Take care,
      Claire

      Like

  2. Thank you for sharing. I’m suffering the same exact pain, and I also cannot lay down flat at night. No doctor seems to be able to help me except to offer pain medication. Atleast I’m not alone.

    Like

    • Hi Beverly,
      Thanks for your comment and apologies for my delay in replying. I’m so sorry that you are going through this- it’s truly awful. I can relate to your struggle and you are not alone- I was so depressed when I kept being fobbed off with an RSI diagnosis I knew to be incorrect. Have you approached doctors specifically about the possibility of endo on your diaphragm? Not sure where you’re based but would be hopeful an endo specialist may be able to help.
      Wishing you so much love and luck. Do take care and keep in touch.
      Claire
      x

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  3. I too have endometriosis on my diaphragm and its excruciating, despite the fact that it covers most of my major organs in my abdo. Nothing relieves this pain and I constantly get hiccups which are incredibly painful. Endometriosis is a ridiculous disease.

    Like

    • Hi Lauren,
      So sorry to hear that you have endometriosis on the diaphragm too (as well as everywhere else of course). I can really empathize with you about the pain and how awful/disruptive it is. Have you ever had any treatment for the diaphragm endo specifically, and what has your doctor suggested you do to manage the pain?
      Do take care and keep in touch!
      Claire
      xx

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    • Hi Karen,
      Thanks for your message. Yes, I was fortunate to know about this before my surgery, so I was able to discuss it beforehand with my surgeon and he reassured me that he would be checking the right side behind the liver. There was lots of endo there so I’m glad he did look- I actually have some amazing photos of if, but they are slightly gross so decided not to post them here.
      Take care and please do keep in touch.
      Best wishes,
      Claire
      x

      Like

  4. Reblogged this on Bloomin' Uterus and commented:
    Today I was going to write about diaphragmic Endometriosis (I have it on my diaphragm, too)…BUT…bumped into my friend, Claire’s, incredible blog about her own experience with it. It’s so informative and wonderful I’ve decided rather than write my own I would just share hers. Thanks, Claire, for this!! ❤

    Liked by 1 person

  5. Hey Claire,
    Thank you so much for sharing your story. I see the doc on Friday for post-op and am trying to learn all I can to be prepared for it. Question, when I google “severe pelvic disease” all I get is “pelvic inflammatory disease”. Is this the same thing? Just seems weird because the latter is “usually acquired during unprotected sex”. Thanks, Rebecca

    Like

    • Hi Rebecca,
      Thanks for your message. It’s great that you are doing your research and trying to be as prepared as possible for your appointment.
      Just to clarify, ‘pelvic inflammatory disease’ (PID) isn’t the same as endometriosis. PIDs are infections that are often (but not always) passed on through sexual intercourse. The NHS Choices site gives a good overview of them here: http://www.nhs.uk/conditions/Pelvic-inflammatory-disease/Pages/Introduction.aspx
      In contrast endometriosis is not an infection- it cannot be caught or transmitted from person to person or treated with antibiotics.
      Have you looked at the Endometriosis UK website? That has some great information that you may find useful. I hope this helps.
      Take care and keep in touch.
      Claire
      x

      Like

      • Thanks for your reply Claire! Ok, I was just confused when you wrote, “… 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.."
        I thought maybe I was missing a puzzle piece, but I think I understand now.
        And yes, I found those UK links about an hour before I came across your post here lol
        Thanks!! I'll keep in touch next week with doc appt. news.

        Like

      • Hi Rebecca,
        Oh yes I see how that’s confusing. I was referring to severe endometriosis in the pelvic region and assictaed structures rather than pelvic inflammatory diseases there. Yes please do let me know how it goes! Will be thinking of you.
        Best wishes,
        Claire
        x

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      • Post-op update: My doctor showed me the photos and I am/was full of dozens and dozens of endo lesions throughout my abdomen and on the right side of my diaphragm! =(
        She was able to get most of it, but the diaphragm locations were unreachable for her. So, I am still in pain =(
        She was patient in my chosen treatment course though and will assist in locating a doctor who can preform the removal of the diaphragmatic endo. I even have a second opinion appt. sched. next month.
        Thanks again for your valuable input!

        Like

      • Hi Rebecca,
        Thanks for the update! It sounds as though your appointment was thorough and it was good that your doctor was able to show you photos from your surgery and discuss options your ongoing care with you. I hope you are able to find someone equally as helpful to treat your diaphragm endo if that’s a route you wish to explore. Good luck with it all, look after yourself, and do stay in touch!
        Claire
        x

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      • Update! I got accepted as a patient with the Center for Endometriosis Care in Atlanta, GA!! I’m so excited. The assisting surgeon I spoke with said they’ll excise everything, check my thoracic wall and lungs and do what they need to do. I’m just waiting for scheduling to call, surgery should be around mid-Aug. Now I’m just anxious to be traveling across country for surgery :p
        Still dealing with a lot of pain. Managing menses with continuous birth control; then pain meds and a back brace or a postpartum belly recover belts for flare-ups.

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      • That’s fantastic news Rebecca- thank you for the update! You will be well taken care of I am sure- I hope it brings you a pain free and bright future. Do keep us posted on how it all goes, and look after yourself.
        Best wishes,
        Claire
        x

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  6. Hi,

    Thank you so much for this. I have been suffering from this pain for a few years now. I have had 2 laparoscopic surgeries for Endo and in my last one it was removed from my ovary, uterus, bladder, rectum, and my appendix.. So badly that my surgeon strongly considered removing my appendix! I am certain I have Diaphragmatic Endo. I have researched as much ad I can and everything points to it. It has gotten worse and worse. It used to mostly occur with my period but I now feel it nearly everyday. It does still worsen with my period. My GP believes I most likely have it after several scans and other tests have come back clear. I am wondering how you are now and if you can tell me who your Dr is that diagnosed you so that I might get in touch and see if I can get treatment. Thank you again.

    Jennifer

    Like

    • Dear Jennifer,
      Thank you for your message, I am glad you found my post helpful. Sorry to hear that you have endo, and suspect that it has spread to your diaphragm 😦
      I was diagnosed with it during my first laparoscopy, which was by a gynecologist at Addenbrooke’s hospital. I just got lucky that they check my diaphragm, as I understand that most surgeons don’t routinely look in this area unless prompted to by a patients symptoms. I then had a second surgery at UCLH where it was treated/removed.
      Hope this helps. Maybe discuss getting a referral to an endometriosis specialist with your GP to discuss your concerns?
      Take care and please do keep in touch.
      Claire
      x

      Like

  7. I feel as though I have this same thing, my first lap revealed extensive endo, and still I get excruciating shoulder pain only with my periods:s my gynaecologist says I need to be referred to a cardio doctor but the cardio doctors never get back to me. I think he just has never seen it because I live in a small town so utterly frustrated by the whole ordeal I just don’t want to be in pain.

    Like

    • Hi Hayley,
      Thanks for your message. Sorry to hear you have been suffering with shoulder pain too- it can be really tough. Is your gynecologist an endometriosis specialist? If not be might be worth switching to one who is to discuss your concerns if possible. If not perhaps focus on pain management with your current doctor or GP.
      Good luck and do keep in touch.
      Claire
      x

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  8. Thanks for writing another great article Claire. Very informative and easy to read. I’m not sure if my shoulder and neck pain is due to endo on the diaphragm or is more to do with bad posture etc because of my frozen pelvis. Is there any way of “knowing” other than via surgery? Either way when I finally have my surgery to remove the adhesions in my abdomen I will make sure to ask them to check the area thoroughly. Thanks for reminding me 🙂

    Like

    • Hi,
      Thanks for your lovely comment, I’m pleased you liked this post and found it helpful. I don’t think there is any way of knowing for sure apart from through surgery unfortunately- definitely one of the major downsides to having endo. I would certainly recommend prompting your surgeon to look at your diaphragm though to confirm it or rule it out. Good luck with it all, look after yourself, and do keep in touch.
      Best wishes,
      Claire
      x

      Like

      • Dear Claire,

        I have had one lot of surgery on my diaphragm and was put on the mirena coil around 18 months ago. Unfortunately I have experienced the same chest pains and back pains as prior to the original surgery. I have spent the past 24 hours in hospital getting pain relief for these horrifically painful symptoms. They are looking into performing VATS surgery at a later date. They have given me the mini pop pill to take along side the coil as I have only been off Zoladex a year and being 25 they are not keen to prescribe this again. I have two questions that I would really appreciate your answers too if you can spare the time? 1 – do you know the name of your consultant who performed your surgery? I am based in Surrey so not too far from the UHCL .
        2 – I am keen to have a family in the near future but am so scared that as the womb gets larger the baby will press on the diaphragm and make the pain even more unbareable – not sure if your consultant has previously mentioned this or if you have any words of advice?

        Endo in this region really does give off terrifying pains. I am glad that you have such a realistic approach to this topic as sometimes I feel there is no hope.

        Best wishes

        Charlotte

        Like

      • Hi Charlotte,
        Thanks for your message. So sorry to hear that you have endo on your diaphragm too and have been having a tough time with it. It really is a special and ‘terrifying’ type of pain as you so rightly said.
        I’m actually worried that my pain is starting to return- my shoulder and right arm have been ‘twingy’ lately. Hoping it isn’t though, that would be the last thing I need right now. I can definitely recommend UCLH is you haven’t already had a referral there. I had Mr Cutner- hope this helps. Haven’t been given any advice about diaphragm endo and pregnancy I’m afraid. I would suggest that you just cross that bridge if/when it becomes a problem and see what your doctor recommends.
        Take care and please do keep in touch.
        Best wishes,
        Claire
        x

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  9. Pingback: Endometriosis & The Lungs | Bloomin' Uterus

  10. Hi Claire,

    Have just read your post and the comments section where you most recently mentioned the return of some niggles in your shoulder .. :-/ so sorry to hear, have they got any worse? .. can you tell me how long since you had the surgery on ya diaphragm?
    I have recently had my first laparoscopy which revealed ‘extensive superficial endo on diaphragm’ I am being treated by dr edi osasgie in Manchester who by all accounts is one of the best endo surgeons in the uk.. however he said he would not remove the endo on my diaphragm during my next scheduled surgery because its too risky (risk to lungs etc I think) anyway he then recommend mayb I just go on zoladex for a couple years as its normally very effective on non pelvic endo. . This was not the response I was hoping for as im very uncomfortable with the idea of zoladex period, let alone potential tong term use which iv read so many times is basically a huge no no… im really confused about his reccomenation and wondering if you have had or heard of experiences of this?

    Like

    • Hi Vicke,
      Thanks for your message. I had the surgery on my diaphragm 8 months ago. I have had a few twinges recently as I mentioned, but nothing major and it seems to have died down again over the past few weeks. I have heard a lot of endo surgeons aren’t keen to do diaphragm surgery- not sure whether that is motivated by risks or the fact that many lack confidence and experience of operating in this area. The article on endopeadia I link to in my post suggests the risks are not greater than for ‘standard’ endo excision if that helps?
      I’ve not had zoladex myself, so I’m not well placed to advise you on this I’m afraid. I would say thought that you shouldn’t do anything your are unsure or uncomfortable about. Can you arrange a time to discuss your concerns with your consultant or endo nurse? Or could you perhaps seek a second opinion? It all depends on how much the endo on your diaphragm bothers you as well. You could try asking around on the Health Unlocked Endometriosis UK forum if anyone else has had their diaphragm operated on in Manchester.
      Wishing you good luck with it all. Please do keep in touch and keep me posted.
      Claire
      x

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  11. It’s 5.40am and after tossing and turning in bed for 2 hours and taking some strong pain killers, I’m now sitting in the couch with a heat pad on my shoulder trying to get some relief. I had a pelvic laparoscopy in Nov to treat very mild endo in the hope that it may boost my fertility and help me fall pregnant. But only my pelvis was looked at. I wish I found this info earlier so I could encourage the surgeon to look higher. The pain is excruciating!!!

    Like

    • Hi Angela,
      Really sorry to hear that you are in so much pain. It really can be awful, and it doesn’t help us to be resilient when it makes us loose sleep does it?! Perhaps something to raise with your healthcare team in the near future. Good luck with everything and please do keep me posted.
      Claire
      x

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  12. Pingback: Surgeries for Diaphragmatic Endometriosis | Bloomin' Uterus

  13. thanks for your post on diaphragm endo! I had excision of endo 2 days ago – the endo was everywhere, and I and was surprised to find out that I had endo on my diaphragm as well! My surgeon removed all of it, yay! After researching the kinds of symptoms it can cause, I’m glad mine were mild. I had “heartburn” regularly while on my periods, occasional sharp stabbing pain under my right rib that would take my breath away (far too occasional for me or any of my doctors to worry about testing, but have always assumed was a possible gallbladder issue), and frequent side stitches when doing cardio. As I heal from surgery, I’m hoping to find these issues have resolved! I had no idea they could have been related to my endo so if they do resolve it will be a huge bonus!

    Like

    • Hi Jen,
      Thanks for your comment- glad you enjoyed reading this post. Sorry to hear that you had endo on your diaphragm but really pleased that your symptoms were relatively mild and that your surgeon was able to remove it. Do keep me posted on things progress and whether the symptoms you described reduce. Wishing you a speedy recovery. Look after yourself.
      Claire
      xx

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  14. I am currently recovering from a laporoscopy hysterectomy due to endo. Diaphragmatic endometriosis was confirmed during a laporoscopy in 2015. I was hoping to have it removed during my last operation but was told that they would need a cardio/chest team to assist. I see my specialist again in 6 weeks to discuss this further. I have to agree, doctors have not taken the pain in my right side and shoulder seriously. Thank you for sharing this information. It sure does help to know I’m not alone. Please do let us know how you are doing since your operation.

    Like

    • Hi Taryn,
      Thanks for taking the time to leave this comment- I am glad you found my post useful. Wishing you well for your upcoming appointments and for your ongoing recovery post hysterectomy. You’re right- I will post an update on my diaphragmatic symptoms soon.
      Take care and please do keep in touch.
      Best wishes,
      Claire
      x

      Like

  15. Hi! I’ll make this quick, I had excision a few weeks ago and had shoulder and upper arm pain very similar to how you describe starting a month or so before the surgery. After surgery she said she found endo on my diaphragm but I didn’t think back to the shoulder pain until this week when I noticed it is back and I found this blog. I was just wondering, is it possible to still be in such pain after it is removed?

    Like

    • Hi.
      Thanks for getting in touch. After my surgery I found that I had sporadic diaphragm pain for about 8 weeks- it seems this area can take a while to heal and settle down. Surgery is a major trauma and internal healing is much slower than how we look on the outside please remember. That was just my experience though- please do speak to your doctor/ surgeon if you have ongoing concerns about this over the coming weeks. You could keep a symptoms diary in the meantime to track the severity and frequency of the pain in the meantime. Good luck with it all, and please do keep in touch.
      Best wishes,
      Claire
      x

      Liked by 1 person

      • Thanks so much for getting back to me! I don’t find that many women with endo that has grown so much…and I’m knew to this diagnosis and it’s comforting to know I’m not alone! I’ll definitely do those things and hopefully start getting some pain relief. Xo!

        Like

  16. Hi Claire. I’d love to know if you got migraines or have a lowered immune system as well? I’m 47 now but have had endometriosis, ovarian cysts and polycystic ovaries since I was 16 – with 9 operations to date. Can’t take the pill or HRT because of my developed allergies. I know what it is like to have cysts burst and the symptoms that come after the burst – e.g. shoulder pain, pelvic pain, bowel problems, etc,. I had a partial hysterectomy 15 years ago but the gynae said only a couple of years ago I had ovarian cysts. I have started to develop migraines – the neurologist stated the neck and shoulder pain is a result of that. However, I have another specialist is looking into me having an insulinoma (tumor in the pancreas). Reading what you have experienced, and the diagrams you have outlined in your article, I am really beginning to wonder if my endometriosis is rampant and potentially causing the discomfort in my diaphragm area. My pain is exactly where you have described. I am so sick of them not finding anything and telling me it’s stress (permanently feeling like a hypochondriac) but I know from previous experience all the blood tests and scans in the world always come back negative. I am going to my gynae in a couple of weeks. Do you have any advice?

    Like

    • Hi Susan,
      Thank you for getting in touch. I am sorry to hear about all you have been going through healthwise, it must be really tough.
      To answer your questions, yes I have had migraines and problems with a low immune system. I was actually seeing a neurologist regularly about five years ago as I was diagnosed with chronic migraines. I must say that the neck pain caused by migraines very different, at least to me, than the pain caused by the endometriosis on my diaphragm. The endo was much more of a deep burning pain and my skin felt tender to the touch like it was bruised.
      It’s good that you have an appointment with your gynecologist so you can discuss your concerns. I was wondering if you get your suspected diaphragm related pains related to particularly points in your cycle? That can be one way to tell. I would recommend keeping a daily symptoms diary and taking it into your appointment, and perhaps a pain diagram like the one in your post. Reading up as much as you can on diaphragm endo (starting with the resources linked in my post) beforehand might also be useful so you can make the meeting as productive as possible. Frustratingly, the only way to know for sure if you have endo on your diaphragm is through a laparoscopy, and only you can decide if this is an agreeable course of action for you.
      Good luck with it all. Do keep in touch and let me know how things are going.
      Best wishes,
      Claire
      x

      Like

      • Thank you! Thank you so much! I had already decided before I read up on this condition to request a laparoscopy. This helps me to understand heaps. I get pain in my diaphragm area hence the insulinoma potential, accompanied with hypoglycemia. (Mine too are chronic migraines – botox injections now the last resort. Not ready for those yet.) This seems to be the same for endo which makes it more than likely to be the diaphragm endo. Yes, I will definitely keep you posted. So glad that I stumbled across your post.

        Liked by 1 person

  17. Thank you for posting this. A lot of this mirrors what I have been dealing with in the past year trying to understand my shoulder pain. Saw my regular doctor, who gave me muscle relaxers (they didn’t really take away the pain at all, but they did let me sleep), and a referral to the physical therapist because we all thought that it was a stress induced muscle spasm in my upper trap (never had pain in the left side though, so that was confusing). Nonetheless, I’ve been doing all sorts of exercises, stretches, etc to alleviate the pain… which mildly helps the symptoms but never the source. Finally I started googling about shoulder pain and menstrual cycles (because no one understood why those coincided and I didn’t realize the spotting before my period was another sign tat was connected to this shoulder pain). FINALLY went to the OB/GYN this week that delivered my babies and he knew immediately what was wrong.

    All of this is so say – this is still very new for me, and I greatly appreciate you taking the time to write about it, because there is so little information out there and it’s nice just to have something else to reference and connect the dots with.

    Like

    • Hi Katie,
      Thanks so much for your message. I am really interested to hear your story. Always a bittersweet moment for me hearing such stories- pleased to not be alone with this but wouldn’t wish anyone to go through it. Your process to getting diagnosed sounds so much like mine! Very frustrating when it takes so long. Take care and please do keep in touch.
      Best wishes,
      Claire
      x

      x

      Like

  18. Hi Claire!
    I have just spent yet another night pacing the house trying to find a comfortable spot to sit or lie in. I was diagnosed with Endo at 17 (bloody lucky I know) and my doc then acknowledged there was Endo clearly visible on my diaphragm but, refused to go near it. I also gave her a shock as she was expecting two cysts to operate on and instead found stage 4 Endo (which means nothing now), a bicornuate uterus and a missing kidney! Fast forward 13 years later and I’m finally going in for a hysterectomy tomorrow with excision of all my Endo possible. However, my diaphragmatic Endo decided to rear its ugly head this week and I have had one of the worst weeks of shoulder pain ever. It’s radiating up my neck, down my back and down my right arm to the point of not being able to stand unless my arm is straight up in the air like an eager student waiting to answer a question. I haven’t been able to take Advil this week due to surgery tomorrow and so, I guess I’m feeling the full effects of no Birth control and no Advil now 🙁 BUT, I did get quite tearful reading your post as you have pinpointed exactly what I have – love the diagram of your pain because that’s what I have! Will tell my doc tomorrow to shift my liver around to find every damn spot of Endo he can.
    Thank you again for the post, it really makes me feel slightly less crazy.
    Love,
    Kimberleigh

    Like

    • Hi Kimberleigh,
      Thank you for your message- I am pleased you found my post helpful. Really sorry to hear about what you’ve been going through health wise. That’s quite a history. I hope your surgery has gone well as can be and will provide you will a better quality of life. Please do keep in touch.
      Best wishes,
      Claire
      x
      x

      Like

  19. Hi Claire!
    I have long suspected that I have diaphragmatic endometriosis, and fear that it was missed during my first surgery 6 years ago. I often get an intense burning that starts in my diaphragm, and moves up my chest, into my shoulder then my jaw then ear. It feels likes its in the muscle, but massage doesn’t seem to help. In your opinion, what’s the best way to approach this with my new gynecologist? Do these symptoms sound familiar to you?
    Thank you!
    Sara

    Like

    • Hi Sara,
      Thanks for your message. Sorry to hear you’ve been suffering. Your symptoms sound very similar to mine- as I say in the post I also had a lot of massages as I thought my problems were muscular. I would suggest keeping a symptom diary and doing a pain diagram (like the one in my post) and taking it to your gynecologist to discuss your concerns. Printing and taking the post on diaphragm endo from Endopeadia may be helpful too. Good luck and please do keep me posted.
      Claire
      x

      Like

  20. I was glad to come across your post, as it is nearly impossible to find anything on diaphragmatic endometriosis without it being in scientific terms. I have been suffering from this condition for the last 6 months, only getting the pain during my period. Two months ago, the pain was so bad that I wound up in emergency, where they AGAIN did abdominal and chest ultrasounds, x-rays (for the 4th time), blood tests and found NOTHING. My doctor kept blowing it off because the pain was under my right rib and going into my neck, ‘probably just muscle pain’ she would say. However, every cycle, the pain got more and more unbearable, to the point where I could not move, speak or breathe without having severe, shooting, blinding pain.

    I have seen a specialist, who has told me to wait 6 months, and see if I can get pregnant. If not, she will put me on hormonal treatment to stop my periods altogether for about a year. She feels that a laparoscopy is too dangerous due to the location of the diaphragm. She also thinks, that because I am young (29 years) it might not be too bad. She did an internal exam, did not find too much thickening, no nodules.

    I guess my question in all of this is, does diaphragmatic endo interfere with fertility? And is there anything I can ask my doctor to do besides wait 6 months? I am thinking, that although most of the pain is in my upper right quadrant, perhaps I also have endometriosis in my uterus? Maybe it needs to be scraped?

    Like

  21. Hi there
    Yes my symptoms are almost identical. The only difference is I appear to suffer less acute pain than you, although my pain can be very debilitating at times and leaves me exhausted and fatigued just doing nothing.
    My story began in 2009 aged 41. Previously healthy and having had 3 normal pregnancies, the last one being 6 years earlier in 2003. I began to experience musclar type pain in my right shoulder blade. It came and went for nearly a year and I treated myself with anti-inflamatories, never linking these bouts of pain with my periods each month. In October 2009 in suffered a spontaneous pneumothorax and was admitted to hospital. This relatively small collapse caused minimal shortage of breathe but severe pain. This happened again several times until in February 2010 I was diagnosed with catamenial pneumothorax. In March I underwent a VATS and Pleurectomy and the insertion of surgical mesh to the diaphragm where 5 diaphragmatic fenestrations were found. 6 months of zolodex injections insured no periods so that the surgery had time to heal. In 2011 and 2015 abdominal laparoscopies revealed further endometriosis on the utasacrial ligament, bladder and bowel.
    In May 2015 I was diagnosed with catamenial hemetosis, an even rarer aspect of TES. My current situation is frequent right sided pain that feels hot, tingly and achy, very much like that of tendon or muscle damage or arthritis which is predominantly along my clavicle and radiates up into my neck, down under my right armpit and upper arm, even as far down as into the elbow and in the shoulder blade at the back, pretty much the exact places in red on your diagram. Having undergone the VATS I was told I have a high pain threshold, thank goodness with this terrible disease. I can only say that my sympathy and empathy goes out to you and all fellow endometriosis sufferers. This incurable, invisible disease is not only extremely debilitating but it also has a massive impact on family and friends who must contend with the effects this horrible condition causes. My only tip to other patients is this, try tweaking your diets as I have found that many foods act almost like poisons. I avoid gluten, diary and wheat as much as possible now and juice fresh fruit and veg daily. There are many detox juice diets to follow which really help to boost immune systems and help fight pain and fatigue. All the best to you, stay well. Lisa

    Like

  22. I was diagnosed with endo 5 years ago. I had a 3 year struggle convincing GP s that I was actually in servere , crippling pain and not just having period pain. It was a hellish 3 years of agony but once I decided to pay for a private consultation I was instantly diagnosed with endo. Via laparoscopy they found it on my pelvis ovaries, Fallopian tubes and uterus! They removed much of it and I then was placed on micro pill. A couple of years later I started having pain in my shoulder very similar to that of endo pain. I started to keep a diary and noticed it started a couple of days before my period was due. I told my gp and they point blank told me I could not get it in my shoulder I explained I had done some research and it seems it can permiate the diaphragm and cause referred pain. After this I demanded a follow up with endo consultant. I saw them a couple of months ago and was told they will not investigate my diaphragm as very rare. I am out raged and feel just as I did all those years ago when my pain began. Tonight my shoulder pain is such that I can’t sleep, cocodamol not touching the pain and I can’t move my arm! Please can you advise me on how I can get help and be heard? Much appreciated x

    Like

    • Hi Ruth,
      Thanks for your message. I am so sorry that you’ve had such a disappointing experience with regards to getting your shoulder pain investigated properly. I would recommend that you continue to keep a symptom diary while you try to get this issue sorted. Are you in the UK, and if so what hospital are you being seen at? Seems like you might need to seek a second opinion- and you could seek this at a specialist endometriosis centre (Google BSGE endometriosis) if you aren’t already at one. There is a group on Facebook called ‘thoracic endometriosis/ lung endometriosis’ group which may be helpful to you, and people there might be able to give helpful advice from similar experiences.
      Drop me an email at endomyworld@gmail.com if you’d like to discuss this more. Am happy to help.
      Take care and good luck,
      Claire
      x

      Like

  23. Hello,
    I came off the pill 3 months ago to start trying for a family, before this i had been able to manage my pain after my first laproscopy with a mixture of pain medications, exercises, diet and the pill coming off it however changed all that. My pain has increased everywhere! Also the past 2 months i have experienced shoulder blade pain mainly in the right side just before coming on, i’ve even worried i’m eptopically pregnant but then tests are negative. Well anyways i woke up wednesday night with the worse chest, back and shoulder blade pain, so bad the pain killers weren’t working and lying down was making it so much worse, the ambulance came out as 111 recommended them to but they found nothing wrong but told me to follow it up at the doctors. The doctors didn’t care, they were concerned about a pain in my right hip and completely shrugged off my concern of endo in my bowel that i’d though id mention while i was there. Do my chest/shoulder blade pains sounds familar? could my endo have spread elsewhere? how could i get the doctors to listen and take me seriously? im so fed up!

    Like

    • Hi Samantha,
      Thanks for getting in touch. I am so sorry to hear about what you’ve been going through- sounds like such a difficult time. The shoulder, chest, and back pain sounds a lot like the symptoms of diaphragm endo- particularly as you are experiencing them on the right hand side. It sounds to me like you need to speak to your gynecologist about this rather than your GP…can you request a referral? In the meantime, keep a daily symptoms diary to keep track of what’s happening at each point during your cycle (there’s a template for one on the Endometriosis UK website).
      Good luck. Do let me know how you get on.
      Claire
      x

      Like

  24. Clair
    My name is Amanda Myers I have battled endometriosis since the age of 17 and I am now 31. I had 8 diagnostic laps before I was 2. I even had internal bleeding on my liver from it at 25. I had a complete hysterectomy at the age of 26 after having two children. I thought my bought with this horrible disease would be over. I am 5 years post op from. My. Hysterectomy and have been doing hormone therapy for only 6 Months and bam! My right shoulder/ gas pain started along with severe right sided rib/liver pain so tender I could cry if my. Clothing touches it. I thought r u kidding me so I skipped My primary Dr and went straight to the gyn Dr. He treated me with some steroids that helped some but the pain was still there and it was wearing me. Down. Mentally and physically. So we have scheduled the surgery for two more weeks from today and the pain I am in right now is crazy and I’m trying to. Do my job as an xray tech lifting on pts and it’s awful some days. Will keep in touch and let u know if it’s on my. Liver or diaphragm u have given me hope I’m. Not batty crazy bc all my. Labs and CT scans are normal which I expected. I just want this shoulder and abd pain to ease up. I want to play with my. Kids again.

    Like

    • Hi Amanda,
      Thanks so much for getting in touch. I was really interested to read your story, and am so sorry for how much you’ve been through and how much pain you’ve been in. Endo really is such an awful disease. I am pleased you found my post helpful. Yes, please do keep me posted, I will be very interested to know how you get on.
      Take care of yourself and best of luck.
      Claire
      x

      Like

  25. When this began you said “shoulder tip” pain. Are you referring to the tip of your shoulder blade or the top portion of your shoulder closer to your ear? And also, how long did these pains initially last? I have been having excruciating pains underneath-ish my shoulder blade but it seems to sort of radiate up my arm and is so intense I often have to lay down.

    Like

    • Hi Micaela,
      Thanks for your question, so sorry to hear you’re in pain. With the ‘shoulder tip pain’ I was referring to my shoulder blades from the front of my chest down into my arms. Hope this helps.
      Claire
      x

      Like

  26. Pingback: What is recovery anyway? | The Endo The World?

  27. Hi Claire,

    I am so happy to run across this! I have found that it is very difficult to find information related to diaphragmatic endometriosis. I was wondering if you could tell me more about your symptoms? My symptoms are 100% related to my breathing, laughing, and especially burping. Taking a deep breath is extremely painful in my right neck area. When I burp, my right neck/clavicle area hurts and when I laugh, it feels like someone is stabbing me in my neck/clavicle area. Does this sound like some of the symptoms you had? I also have pain but accompanies this in my right upper quadrant abdominal area.

    I do not have symptoms of pelvic endometriosis. Did you have pain in your pelvis?

    I really don’t know who to talk to about this, because it doesn’t seem to be very popular on the Internet. I have talked to my GYN doctor and we’re trying to figure out birth control pills to help control my symptoms. I don’t know if I’m ready to have surgery yet.

    Thank you,

    Sarah

    Like

  28. Pingback: Surgery For Diaphragmatic Endometriosis | baz

  29. Hi Claire,

    Thank you for sharing your story. Having this disease is so challenging in so many ways. Do you mind if I ask you how your surgery was performed? Laperscopically ? I am from Boston and the doctors here are telling me that Lupeon until menopause is my only option. It doesn’t sound like a very good option for me.

    Thanks,
    K

    Like

    • Hey Kris S.
      Say no to Lupron, join Nancy’s Nook on Facebook, research the info available there and find yourself a Nook doctor.
      I just had (two weeks ago) the endometriosis on my diaphragm REMOVED COMPLETELY via laparoscopic excision with the Center for Endometriosis Care in Atlanta, GA.
      I’ll create a more detailed version of my experience, just know there are many other options avail besides (awful) Lupron 😉

      Like

    • Hi Kris,
      Thanks for getting in touch- I’m glad you found my post helpful. Yes, my diaphragm surgery was performed during a laparoscopy. Sorry to hear about your experiences in Boston. There’s a Facebook group about diaphragm/thoracic endo that might be helpful for your to join. It has a lot of members, and there maybe someone in your area who can recommend a helpful doctor.
      Good luck, and keep in touch.
      Claire

      Like

    • Hi Tracy,
      Thanks for getting in touch, I am pleased you liked my post. Sorry to hear that you have been suffering with similar symptoms. I hope you are able to speak to your doctor about these. I’m always here if you want to talk or advice- you can find my email through the ‘contact’ tab on my site.
      Take care of yourself.
      Claire
      xx

      Like

  30. Thanks so much for sharing!! I just had my first laparoscopic surgery this week and my surgeon was surprised to find 2 lesions on my diaphragm, one on the left side and one of the right. Both were removed, but the one on the right was the full thickness of my diaphragm, so a small hole was made and then stitched up, leading to a mild pneumothorax. Thankfully, they monitored me over night in the hospital and it had improved by the next morning. But aside from general abdominal pain following surgery (endo was removed from 3 other sites), my right shoulder and chest have been throbbing.

    Thanks for creating this educational forum!!

    Like

    • Hi Karina,
      Thanks for getting in touch. I hope you are resting and looking after yourself following your surgery! Really sorry to hear that endo was found on your diaphragm, but pleased you had a surgeon who was able to remove it. Keep me posted on your progress and recovery.
      Take care.
      Claire
      xx

      Like

    • Hi Karina, I’m glad you’re ok after your surgery and I hope you’re on the road to recovery! Do you mind me asking who your surgeon is? Are you in the U.K.? I’m trying to find an experienced surgeon to treat my diaphragm, but struggling.

      Thanks in advance!

      Like

      • Hi Annie,
        I’m in the US and had my surgery in Portland, Oregon. If you haven’t joined the “Thoracic Endometriosis/LUNG Endo Group” on Facebook, it seems to be a good international resource. I also found this link helpful (written by a retired endometriosis specialist in Oregon): http://endopaedia.info/subtype16.html
        Good luck with treatment!!
        Karina

        Like

  31. Hi Claire, thanks so much for posting this. It’s nice to not feel completely alone in this. How are your symptoms now after having it excised from the diaphragm? Can I ask if you had treatment privately in the end? I have severe stage 4 endo all over my pelvis, as well as on my diaphragm. At the moment the symptoms from my diaphragm are mild, but I get the neck and shoulder pain during my period and throughout the month. I’m getting treated by an excision specialist on the NHS for my pelvic disease, but he’s not able to treat the diaphragm. I’m desperately looking for a surgeon in the UK who can treat it properly so any tips or advice you have would be amazing.

    Thanks,
    Annie xxx

    Like

    • Hi Annie,
      Thanks for getting in touch. Really sorry to hear what you’ve been going through- I know how frustrating it is! I had my surgery at UCLH in London, if that helps. 18 months on I’m doing well, I haven’t any shoulder/back pain flare ups since my surgery- and I used to have them really badly, but I do have the occasional twinge. I very happy to chat about this more on here- or you can email me on endomyworld@gmail.com
      Take care,
      Claire
      xx

      Like

      • Thank you Claire, that’s really helpful. I’m so glad your surgery was effective and that you’re in less pain. That’s so great! Can I ask if you saw your surgeon privately in the end, or did you manage to get your treatment on the NHS?

        If it would be easier to discuss over email, just let me know and I’ll contact you that way.

        Thanks!
        Annie

        Like

  32. Hi Claire. I am currently dealing with every single symptom you have laid out in your article, most notably the excruciating right shoulder pain. I’m still 4 months out from being able to see the endometriosis specialist and I don’t know how I’m going to cope through this winter. You had mentioned anti-inflammatory medication so I’m curious what you used. Any suggestions at all to cope with this for the next 4 months is much appreciated. Also, did the surgery help??

    Like

    • Hi Marissa,
      Sorry to hear you’re going through this- I know how rubbish it is. To be honest the strongest stuff I used was ibuprofen. I also found heat worked (relatively well), applied to the diaphragm area rather than the shoulder. To be honest I never found anything that really helped much when it flared up very badly.
      My surgery has helped a lot! Haven’t had any major flare up since, just the odd twinge.
      Do keep me posted on how you’re doing. You can also contact me on: endomyworld@gmail.com
      Take care,
      Claire
      xx

      Like

  33. Hi there I’m hoping someone can give me some Advice. I had a DNC at the beginning of the year and after waking up had sever pain under my ribs shoulders and chest. After an hour or so it sub sided just to the right side but was extremely painful. I was told that I had blood go into my abdomen during the surgery.
    After a few days in the hospital I was sent back home, only to return to the ER and found out I had retained tissue. So instead choose the misposal pills and they sent me home. I returned for a 3rd time in severe pain soaking pads every half hour. While in the hospital they said I had passed everything.
    Fast forward 3 months later I began having moderate pain on and off on my right side. I could feel presure on my hip bone. Also my periods still wernt going back to normal. I found out I StI’ll had retained tissue and an ovarian torsion. I was rushed for emergency surgery. As soon as I woke up the pain I had been experiencing was gone.
    I’ve been back at my regular activities for about 6 monthss now. My IBS has increased in symptoms, also I’ve began to having uterus cramping and right side pain again in my hip. Also my back and tailbone hurt and recently started to get pain under my right rib abdominal shoulder again. I havnt been able to each much without being nauseated or feeling full quickly. Should I go to the ER?

    Like

    • Hi Sarah, really sorry to hear you’ve been going through this.
      You know your body best- if you think you might need to the ER please do. Happy to discuss your symptoms further if needed.
      Take care and keep in touch,
      Claire
      Xx

      Like

  34. Ive been dealing with this for over ten years . Its gotten worse over the years. Right now my pain is wicked and wakes me up out of my sleep. Doctors look at me like im crazy when I explain my symtoms espesically when I tell them my period flares it up every month like clock work. The pain is so bad Im totally disabled until I take 1200 mg of ibuprofen and i must take that much every 4hrs cause it flares up again. The pain is totally unbearable equivalent to child birth. I dont know what to do. It now flare up almost three weeks out the month not only do it hurt but its very depressing.

    Like

    • Awe, I feel for ya. I would recommend to keep pressing the issue. Everytime it’s happening go to the doctor or yet even the ER. I live in Canada so I’m not sure if that’s a direct option for you. But 4 days ago was the 3rd time I went in. The Dr. Finally listened to me and I explained my story. He thinks it’s endometriosis as well but only surgery will help confirm that. He also found a polyp in my uterus. I have pain medicine until i have surgery. Trying to now get a hold of my gyno to see him sooner. But surprise surprise I had to call the hospital to send my info to him. I can only imagine how much you have suffered as well. I know the pain, the frustration of not being heard or brushed off. Trying to cope with it can be an every day struggle. Waking up nauseaed everyday because the endo causes IBS…. The jolting pain under your rib that goes through your shoulder… Tailbone pain… know that you are not alone!! I hope you get some answers and help soon. Best wishes.

      Like

    • Hi Talisa,
      Thanks for your message- really sorry to hear what you’ve been going through. Sounds really awful. I can only echo Sarah’s comment and hope that you will be able to get some help from a doctor. Nobody should have to suffer like this. Please do email me on endomyworld@gmail.com if you want to discuss further.
      Best wishes,
      Claire
      xxx

      Like

  35. Did you have trouble laying on your left side during your period? I’ve finally got referred to a gynaecologist. After years and years of horrific pain whilst having periods. I have recently just come off the pill in plenty of time ti start a family next year and the pain is even worse. It’s debilitating to the point where I can vomit from the pain and pass out. Mine is mostly bowel and uterine pain but when I do lay on my left side in bed when it’s that time of the month it’s extremely uncomfortable and I feel like I have a pain in my arm shoulder and chest. This blog is invaluable as I have never heard of this but it’s certainly explaining a lot of my symptoms. I think I’m going to ask to be referred to an endo specialist. I’m 35 this year u don’t have time to waste especially as we want to start a family by the tume I’m 36. My age is not on my side. Thankyou so much. 😊

    Like

  36. Do you mind if I ask if you have breast implants? A group of us have the same problem and we happen to have implants. Doctors claim it is stress. We have a few other strange similarities, so I’m wondering? Thank you?

    Like

  37. Thank you! I was recently diagnosed with severe endometriosis, which like you was a bit of a shock. I’ve got my follow up with the surgeon soon (literally only had a brief drugged-up. chat with him post op) and am trying to equip myself with information so I can ask the right questions. Your diagram of where you feel pain is so helpful.

    I have multiple conditions so I’ve found it hard to pick apart what might be the endometriosis. The shoulder pain may well be my most recent manfifestation of it and the reason my physiotherapist always makes a little progress and then it flares up and we are back to square one!

    Anyway, thank you for writing this, I’ll have to remember to share my experiences too once I get myself to an excision surgeon and have proper treatment!

    Like

  38. I can relate to so much of this! My chief complaint, however, is the excruciating pain I feel on my right side that resembles gallbladder pain! It’s hard to breathe all the time, but moreso when I lay down. I am having excision in April and am so anxious to see what is fojmd in there!!

    Like

  39. I’m always comforted to read stuff like this as I have had an awful journey (still ongoing) with possible thoracic and diaphragm endo. Going on almost three years, it began when I stopped the birth control pill to have a baby with my husband. Severe chest pain, upper abdominal pain , feels like breathing in razor blades or like someone is putting cigarettes out on the inside of my chest. It is extremely cyclic and is incapacitating on my period. I’ve had to quit my job and it’s royally ruined my life with crippling effects. I’ve had every test done under the sun and FINALLY in the next month or so I’ll have a thoracosopy done to I spent the whole area and remove endo. I’ve also been diagnosed with endo of the pelvis and pcos. Been a long haul, doctors all have told me its in my head and they’ve never seen it so it doesn’t exist – finally I found a specialist after three years who seems to care.

    Like

    • Hi Danni,
      Thanks for getting in touch, I’m glad you’ve found my blog helpful.
      Really sorry to hear what you’ve been going through. I know how painful it is, and it can be a bit of a nightmare getting treatment for thoracic endo. Please do keep in touch and let me know how your thorascopy goes. Also, feel free to contact me anytime (endomyworld@gmail.com) if you need to talk some more about this. Am here for you.
      Take care,
      Claire
      xx

      Like

  40. Has the endo pain stayed in your shoulder only? About 4 years ago I hiccuped (I kid you not) and felt a pop under my rib. For two weeks straight I had horrible muscle spasms and the doctors said I tore an abdominal muscle. After months on discomfort I began to notice my pin was cyclical as was my shoulder pain. It took a months, but a family friend who is a radiologist looked at an MRI I had had for something else and noticed I had endo in my abdominal cavity. It’s in my diaphragm, liver, abdominal wall, ovaries….I went off the pill to try to get pregnant and I ended up with debilitating pain…every month I’d end up nearly passing out from pain…my entire right side of my abdomin would spasm, I had a deep burning gnawing pain, and I couldn’t take deep breaths. I ended up hunched over for about two weeks every month. After having a baby, the endo pain is back, but not as bad since I” on the pill again. But I still have deep gnawing discomfort that makes me nauseated and extremely uncomfortable. I’m grateful the pain is not what it once was, but I am still greatly limited because of this disease….can’t work out most of the time, can’t eat dairy, gluten, soy, and live in fear of the pain getting worse. I have never met or spoken to anyone else who has this type of endo. Are there any support groups for us?

    Like

    • Hi Jessica,
      Thanks for getting in touch. Was really interesting to hear some of your story. Really sorry to hear you’ve been in so much pain.
      Are you on Facebook? If so there is a support group on there called ‘Thoracic endometriosis/ lung endometriosis group’. Feel free to email me too (endomyworld@gmail.com) if you want to discuss things some more.
      Take care and keep in touch.
      Claire
      x

      Like

    • Jessica, I’m so sorry youve struggled so much! I was also diagnosed with endo, officially in October last year through diagnostic surgery with a specialist, though I’d known I’d had it for years before that point. I have / had stage 4 severe endo throughout my pelvis, on my bladder, bowels, uterus, both ureters, in my vagina itself (!), and on my pelvic side walls. My bowel was fused together with my uterus and my kidneys were close to failing. I also have it on my diaphragm and get ad (but so far, manageable) neck and shoulder pain referred from the diaphragm. I had all my pelvic endo completely excised by an endo specialist 2 weeks ago, but he didn’t touch my diaphragm as I need a thoracic specialist for that. There is an incredible support group called Nancy’s Nook Endometriosis Education on Facebook – I can’t recommend it enough. I feel like it saved my life as it led me to a specialist who knew exactly how to treat my severe, debilitating endo, rather than being messed around by general gynos who know shockingly little about this disease, and can do more harm than good. I hope you can find the group and get in with a specialist so that you no longer have to live in fear of the pain. Good luck x

      Like

  41. Can you tell me if your nausea subsided at all when you ate then returned once you had finished eating. I was diagnosed at the age of 25 with endometriosis and had surgery to have it lasered away. I am now 42 and experiencing horrific pain in my upper abdomen mire so than the pelvic area. Have had pain in right shoulder, aching neck and back, extremely lethargic and aching legs. I have continual nausea and headaches. Been to emergency on 3 occasions given pain meds and sent home after blood tests come back fine. Ultrasound showed no signs of gall bladder issues. Diaphram xray showed no wind pockets and endoscopy showed no ulcers. Now just living on nexium, gastrogel and maxalon. Please help .

    Like

    • Hi Natalie,
      Thanks for getting in touch. Really sorry to hear about what you’ve been going through!
      Nausea hasn’t been a huge, or at least frequent, problem for me. It usually does subside when I manage to eat a little something.
      I know it’s really frustrating when you have loads of tests but still can’t get to the bottom of what’s going on. Have you kept a daily symptoms diary for a few months to track to what extent the problems are cyclical?
      If you’re worried keep pressing your doctors for answers.
      Am here if you ever need to talk further, my email is: endomyworld@gmail.com
      Best wishes,
      Claire

      Like

  42. I was just diagnosed through laparoscopic total hysterectomy this past week that I indeed have endometriosis growing on my diaphragm, as well as my liver and surrounding abdominal organs. The pain was quite different for me in the fact that it was only during the first 2-3 days of my menstrual cycle but it was debilitating, affected my breathing, and would send me to the emergency room every other month. Then some months the pain was tolerable. It was quite strange. The doctor put me on Ponstel only because he didn’t understand why the pain would be so high in my belly and so unpredictable if it was related to endo (I fully understand his skepticism because it was strange to me). The medication did help take the edge off, but never took the pain away. I am grateful that I am at the age where a hysterectomy is of no concern. Otherwise, I would always be scared that the endo would come back. There was just so much of it. My doctor is now a believer and I am so grateful that it was so obviously there. We know our bodies and we need to stand firm with our physicians, which is what I did. I knew it was endo from a past history of it. I just needed him to get in there and see it. He was glad I stood firm in the end.

    Like

    • Hi Barbara,
      Thanks for getting in touch. Sounds like you have been through a lot lately, but I’m glad all your endo was found and that you’ve had treatment. Look after yourself and wishing you the best with your recovery.
      Best wishes,
      Claire

      Like

  43. Thank you so much for your blog post. I wont ramble on about my story, it is much the same as yours and everyone else who has commented. But by writing this you just might have contributed to saving my life. Because I do not think I can live with this pain much longer. Th

    Like

  44. Hi Clare, thanks for the fantastic blog, it’s a great resource for fellow sufferers! I’ve had skilled excision surgery for very severe stage 4 across my pelvis and have confirmed endo on my diaphragm. I’m trying to find a skilled surgeon in the U.K. to fully excise it and to perform a VATs to view the whole diaphragm. I know you were with Mr Cutner at UCLH – now that it’s a while on from your surgery, can I ask how you’re doing? Has the pain gone or at least become more manageable? I really hope you’re doing well and are as pain-free as possible. X

    Like

    • Hi Annie,
      Thanks for the kind words, I am glad I can help people a little bit.
      18 months on from my surgery and I haven’t had any major problems on the diaphragm front. I’ve had a couple of ‘twinges’ where it hurt mildly for a short time, but no major flare ups at all.
      Hope this is helpful.
      Claire

      Like

      • Hi Clare, thanks for replying. I’m so glad to hear that you’ve not had any further pain on your diaphragm since surgery. It also gives me (and others I’m sure) hope! I hope you continue to be pain free. All the best, Annie x

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  45. Hi Claire,
    I was diagnosed with endo After a myomectomy of a 12 pound fibroid 1 year ago. My surgeon found one lesion inside my uterus. I am 43 and have had mysterious unexplained pains in my abdomen, joints and back my entire life as well as prolonged attacks of the hickups. Doctors say I have arthritis as well as gastritis but no treatments helped me accept with Motrin and got Epsom salt baths. I currently have constant pain in the center back of my neck for about the last 4 months and now it’s also deep in my right shoulder, arm and Hand. My left toes also get numb and are painful as well. I had been on birth control for 20 years and the minute I went off it all he’ll broke loose. My new Doctor says the pill was suppressing my endo symptoms all that time. What treatments are you using now? I am taking turmeric pain formula Advil and piqnogenol. I would love your tips as well. Thank you for sharing your story.

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  46. Thank you for this article. I was diagnosed with endo on my diaphragm 3 years ago after 6 years of money thrown away at doctors who misdiagnosed me. Mine moves faster than Usain Bolt and has since spread to my liver and we now suspect my lung. After 2 major surgeries resulting in a punctured lung and hole in my diaphragm I’m a year into IVF to try to get pregnant to stop it spreading so viciously. I’m sure there are so many other women out there suffering this who have been misdiagnosed so thank you for raising some awareness.

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