Endometriosis UK
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Diaphragmatic endometriosis, has anyone been diagnosed with this? Need advice please

I'm awaiting a lap to find out if I have endo although my consultant is very certain that I have it. The thing is I've been having symptoms for about 2 years that I didn't think could be related to endo until I came across diaphragmatic endo, these symptoms are pain in right shoulder and arm, pain under ribs and upper abdominal pain. I've even ended up in a&e a few times as the pain was so bad. Anyone know whether I should phone up my consultant to inform him of this so they can check that too in the lap or wait until the day I go in for surgery? x

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I've never heard of that, it sounds awful. I think it's definitely wise to pass the info on to the consultant as it sounds less likely to be typical endo.

When I had my lap surgery, it was a different consultant to the one I'd met before hand that carried out the surgery and they came and spoke to me before the surgery so that would be an ideal time to mention it. Maybe other people will confirm if this happens for all surgeries though?

If you feel it'll put your mind at ease more then you could always phone up AND check they are aware before the surgery on the day. That's probably what I'd do now. I'd check and double check. Plus also maybe write it on my abdomen in permanent marker just in case! And get a tattoo! 😂

I wouldn't assume they'd check for it so definitely a good thing to tell them.

Good luck 😊

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Thanks for your reply ☺ I'll phone up tomorrow as his clinic is only open Thursdays x

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Hi Lizzy

I am in the same position. I am due to have surgery at the end of the month for RV nodule and endometriosis bowel issues. However, my pain has got worse since my last visit to he consultant, it is much higher up under the ribs and causes numbness into my back. I phoned the pre-op team and they suggested I talk before my surgery and that it wouldn’t be overlooked. Hope they are right. I would telephone your consultants PA or nurse.

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Thanks for your reply, I'll do that ☺ good luck with your surgery x

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Hi Lizzy

I called the endo nurse today as a result of your post. She has assured me that the surgeon discusses any recent symptoms before the surgery and will not close me up without taking a look high up as far as the diaphragm if the pain I describe is in that area. I am glad I called as I was able to discuss all sorts of questions and it prompted an appointment with a stoma nurse that should have been organised in advance of my op in 2 weeks. So thank you for your post and now I am telling you to make a similar call and make sure they know your pain might higher inspection. Good luck to you.

Melanie

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Thanks Melanie I'm glad you're getting it sorted out ☺

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I’d phone and inform and then follow up with telling your surgeon again when you see him just prior to your surgery to remind him. I had extensive Endo removal and after 9hr surgery my surgeon called it a day, he was extremely thorough but 2yrs post surgery I saw him again and mentioned that I thought I had symptoms of Endo on the diaphragm (exactly as you describe) which he agreed and said it was entirely possible given the severity of my disease. Anyway, he checked his notes from surgery and was really sorry to tell me he’d not checked the diaphragm in surgery, I don’t blame him as it was an extremely long operation and he had an awful lot of work to do, but he did agree with me when I mentioned symptoms that that could be the case now. Unfortunately, my surgeon’s just retired so I’m putting up with the really bad shoulder blade pain/rib pain until I find another surgeon I can trust!

I’d certainly mention it and mention it again just prior to when u go in and ask that this specifically gets checked as a lot of surgeons don’t check this area. Better to speak up!

All the very best x x

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Thanks for your reply ☺ when I went to hospital they said I must have pulled something even though the second time I went to hospital I'd just been watching tv when the pain hit me out of nowhere. I also get really bad mid backache too like a really deep burning. I will phone up and hopefully get somewhere lol xx

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Classic reply from doctors telling you that you’ve maybe pulled something. Trust your instinct and ask to be checked in surgery, your body you ask for what you want looked at I’d say! I have no trust in doctors, they missed my Endo for 24 years....if you feel you’re not right then keep pushing for answers. All the very best for your operation xxx

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Thank you ☺ and I hope you find a good surgeon hun xxx

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Thanks love, all the best for your surgery x x

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Hi lizzy,

I recently started on decapeptyl injections had my first injection I'm April amd not long after I've started to have pain in my neck I thought id slept funny but the pain has spread to my right shoulder /shoulder blade area also I have pain around my right breast and also underneath my right breast I have tried to contact my gyn as I'm not sure if it's a side effect of the drug or is it a new endo symptom I was told to go to my own gp and get a letter to present to the maternity a&e for assessment I haven't done this to be honest as I am actually sick amd tired of doctors and hospital... half of them ignore us amd the other half all they say is lose weight or its all in your head...

Thank you so much for writing this post as now I know I'm not the only one with this pain and that I am not crazy or making it up.

I really hope you feel better soon and that you find the right consultant for you

Xx fiona xx

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Hi fiona, areyou still with an endo consultant? As I rang my consultants secretary this morning and told her about these symptoms and I told her it's written in my pain diary (which my consultant didn't look at) so she's advised me to email her pictures of my pain diary and she'll pass them onto my consultant. Hope this helps you xx

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Ya I'm still with my consultant and everytime I have rang to try talk to a member of his team about my symptoms there is no one available to take my call but the secetary told me get a letter from my gp and present to the hospital a&e that's a great help isn't it.

Thanks for giving me this info I might try this.

Xx

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It's worth a try cos then she might pass it on to your consultant and he could arrange an appointment xx

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Hi, I post lap 5 weeks today, I was diagnosed with stage 4 endometriosis which they found I had it on diaphragm amoungst everywhere else! My pain is all over my abdomen so it didn’t surprise me wen he told me it was pretty much everywhere .. before your surgery your surgeon will speak to you before your surgery goes ahead , you could mention it then.. they told me they had checked everywhere I didn’t expect them to tell me i was stage 4.. all the best for your lap!! And fingers crossed it’s not bad news xx

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Thank you ☺ is it standard procedure to check the diaphragm or should I mention it to the surgeon on the day of my surgery? xx

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I’m not sure if it’s standard procedure, so I would say to your surgeon when they speak to you , i was under for 3 hours all they done had was looked around and took pictures as mines was complex and severe they were not allowed to touch anything.. so I’m not sure if that why they had a good look around everywhere they also found I had it on my liver / gallbladder which there are all upper aswell .. but definitely say to your surgeon... and if u get pictures ask for them or do I what I done and looked at my file and took pictures of them off my phone 🙈😆! Not that I understand the photo’s and there definitely not nice to look at.. but It’s good to keep them .. Xx

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I don't have a gallblader but I'll definitely mention these symptoms as I get terrible upper abdominal pain feels like pressure/squeezing xx

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Yup they symptoms sound familiar.. wish you all the best xx

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Thanks and you too ☺ xx

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This sounds like me, too. It's 10 years since my last laparoscopy and at that time my endometriosis was grade 4 and basically everywhere including my bladder, stomach and my bowel was fused to my pelvis. My main symptoms now are upper abdominal pain, severe bloating, right shoulder pain, and difficulty breathing. I've been referred to a different consultant as mine has now retired and am waiting for an appointment. I would honestly rather have the horrendous period pain back than this, I got quite good at managing that! Hope you get sorted soon Xx

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Thank you and you too ☺ I have emailed my consultants secretary the pages of my pain diary so hopefully will hear back soon xx

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Please do let your surgeon know in advance about your diaphragm! It’s rare to have it there and even though I had a very good surgeon for my first surgery she saw it but didn’t remove it because she didn’t think it could be endo there. She later admitted this was probably a mistake as after me saw another lady with more obvious diaphragmatic endo. I did get a fair bit of relief from the first lap because my liver and diaphragm were stuck together so when I was inflated for the lap it broke the adhesion. But she properly removed it during my second surgery when the pelvic endo recurred too. I’m having excision surgery in a few weeks on my diaphragm as I’ve got symptoms of recurrence - sounds exactly as you describe. However my surgeon (this time I’ve done my research and I’ve gone for a more experienced endo specialist) has sent me for a couple of MRIs and is working in conjunction with a liver and diaphragm surgeon to get his advice, so again just to reiterate your surgeon will need time to prepare and think about what he or she does if endo is on the diaphragm. If it helps reassure you my symptoms are: stabbing pain in the ribs, trapped nerve pain in shoulders and arm, diaphragm going into spasm, needing to stretch between shoulder blades (which you can’t do so is an infuriating sensation!), constant hiccups, getting out of breath easily, pain in vertebrae. In addition to severe nausea, pelvic pain, chronic fatigue and severe bloating. All diaphragm symptoms are made a lot worse with eating! When my liver was stuck to my diaphragm I used to have to eat all meals lying down because of the pain and couldn’t sit down for any period of time. Sorry you sound to be experiencing the same - as I say please do talk to your surgeon in advance so they are prepared to look thoroughly in the area and consult colleagues if needs be! Good luck x

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Thanks so much for your reply it really helps ☺ I get terrible pain in my shoulder blades but put it down as upper backache, I'm due my period sometime this week and I've got pins and needles in my right arm it's really uncomfortable, can I ask do you get this? x

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That’s apparently the most common symptom of endo on the diaphragm as the nerve endings for the diaphragm are in the shoulders?! I’ve never personally had pins and needles but that’s not to say it’s not a symptom because we all feel things differently - my arm pain feels more like a trapped nerve. I had an osteopath check out all my back, neck and shoulders to make sure it wasn’t a musculoskeletal problem and he couldn’t find anything wrong with the spine. Maybe you could do the same if it will put your mind at rest - think a session is about £40. It was also back up to tell the surgeon that there was nothing wrong with my back so to double check for lesions on the diaphragm! Good luck! Let us know how you get on xx

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Thanks you too ☺ xx

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Hi, I have been diagnosed with this. My surgeon saw some endo on my diaphragm at my last lap alongside endo across my pelvic region and adenomyosis. I and the surgeon had no idea that I had this and didn't have any symptoms leading up to it. Worth mentioning your symptoms though as it will mean that the surgeon will particularly look at your diaphragm and not miss it. I don't know how far away your lap is but it wouldn't do any harm to get a message across through your surgeon's secretary beforehand and mention it on the day of the op itself. Hope this helpsx

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Thank you ☺ I've already spoken to his secretary and emailed her pictures of my pain diary, she's replied saying she'll pass them onto him so hopefully they check that during the lap x

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It's definitely worth informing them, but it could just be transferred pain. I'm currently waiting on a date for a laparoscopy too, and have a page of information that lists transferred pain in the shoulder specifically :) x

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