Diaphragm Endometriosis

This video is appropriate for the general public, those with, or suspect to have Diaphragm Endometriosis (DE) and healthcare providers and practitioners. Video content include symptoms, statistics, characteristics of lesions, limitations of imaging to detect disease and important surgical concerns that highlight the need for evaluation and treatment by an excision multidisciplinary surgical team with advanced surgical techniques and knowledge to identify and remove all forms the disease presents as. #ExtrapelvicEndometriosis #ExtrapelvicNotRare #WeAreExtraNotRare #DiaphragmEndometriosis #ThoracicEndometriosis Syndrome

[@rollandatella]

This is the best description I have seen so far. I felt like I was the one writing the women's description cos I've been experiencing them also. Thank you for sharing.

[@extrapelvicnotrare7133]

Wow, thank you

[@iceskatergirl409]

I have every symptom of this, and it has been progressively getting worse, at the point I’m in pain on a Daily basis, but it is in tune with my periods and I’m more and more sure this is what I have. No doctors will listen.

[@Angels_Are_Real]

Thank you for this. Bless you. 💕

[@derangedpoetess]

Wendy! This video is so good and clear. This must have taken so much time to put together.

[@extrapelvicnotrare7133]

Thank You for the kind words. Yes, it is very laborious. The duration is not representative of the hours behind creating it. Appreciate your observations. W.

[@emilymcfarland8807]

I have been told I have this I have had my left lung collapsed since April it's a small collapse. But I have had 16 collapses since 2014 and get treated like a POS i pretty much stopped going to the doc for it bc of how I'm treated.

[@helterweigates5300]

Really interesting - thanks.

[@extrapelvicnotrare7133]

Thank You for watching!

[@painoftheheart12]

I have had so many images done over the years and all I have been told is I have cysts. But my pain is excruciating. But they keep telling g me I have nothing wrong. They won't help me and just give me birth control. And when I ask for new bc because it stops working I'm told to suck it up because it still works, as birth control, for longer. But im in so much pain again. I just feel I need to be in the severe pain I used to be for anyone to take me seriously.

[@extrapelvicnotrare7133]

I am very sorry to hear of your struggle. This is a common issue persons with the condition face with medical encounters. 'Extrapelvic Not Rare' has been established as a non-profit to improve awareness, recognition of signs and symptoms by healthcare professionals and the public to prompt improvement. EPNR is dedicated to give up-dated evidence-based information of trends of clinical history, symptomology, conditions which must be ruled-out and limitations/outcomes of clinical diagnostic tools (ie. imaging) in diagnostic assessment. Another goal of EPNR is identification and reduce the gaps between healthcare professionals' understanding of the condition and the patient experience through research and awareness projects, educational programs and communication with medical organizations for guidelines and policies of medical education and professional standards.

[@baileysice2715]

Hi how are you now, any further forward?

[@natashahutchinson7971]

Hi dr wendy!! I’ve had 4 right side lung collapses in an 8 week period. 3 of them ended in chest tubes and one was part of a surgery (unfortunately I had another lung collapse 7 weeks post op). They did the procedure where u scrape or irritate the chest wall to get the lung to adhere as it heals but I guess that didn’t work for the lower part. My surgeon says anymore surgeries is now too dangerous but if I was to have another lung collapse there is “talc” they can put in the chest tube to aggravate the lower part of my chest wall. I’m still waiting to hear back from the specialists I’ve been referred to and have been offered birth control or hormone suppresents. They found no blebs and did not remove a piece of my lung like they intended to during surgery. I suffer from very acute shoulder pain but on the left (is that possible). I also have had pain in my chest chronically but random that I called “my rib going out”. Makes me wonder if it’s DE? But I’m your video there’s no mention of people getting shoulder pain on the opposite side to the pneumothorax’s. Also, if there isn’t another option given than surgery or hormone suppresents, wouldn’t pregnancy and nursing do the trick to stop your period? I would much prefer this option! Sorry for the extra long comment

[@poeticjustice144]

I have had endometriosis pain for years. I have symptoms of pelvic, umbilical, and diaphramic endometriosis. I've done imaging and my doctor saw nodules on my lung and umbilicus. For years I've been saying this is probably what I have. My doctor is going to take the umbilical nodule out and do a laparoscopy of my pelvis, but I wonder if I can convince her and the general surgeon to also look at my diaphram so I won't have to have another surgery later on

[@extrapelvicnotrare7133]

I would refer her to this video. It may be that your surgeon has never seen, nor treated diaphragm disease. If this is the case, its advised you obtain another surgeon. Given that most surgeons do not have skill set and/or equipment for the approach needed to fully assess the diaphragm, a second opinion with experienced surgeon is important. However, there are also other diagnoses and even areas remote (ie pelvic floor) that can refer pain to the areas where diaphragm endo is suspect.

[@novemberr.8600]

Can I use clips from this video to explain the disease when I tell my story in a video on KZbin?

[@extrapelvicnotrare7133]

Its important that disclosure of the original source of this video is publicly viewed. It is a good idea to create a link to this channel - or even better, a link to the website where it can be viewed better: extrapelvicnotrare.org/webinars-and-educational-videos/ Thank You. W.

[@thickgoddess1835]

Whoa.. I have been having a right chest shoulder sometimes neck arm and upper right back pain that comes and goes for months now. I have been keeping my eye on when it starts and it's always around the time I expect my period... And sometimes lasts atleast a week after..I came here after researching what it could possibly be. I have the symptoms and my dr suggested it was muscle strain. I also suffer from horrible reflux when this pain flares up.. Wow. I will be scheduling another drs appointment asap

[@extrapelvicnotrare7133]

Hello, reaching out to you in regards to pursuit of a diagnosis. Please visit our website for more information about the disease, especially the Virtual Education pulldown menu where "The Beginner's Guide to Thoracic Endometriosis' is listed. Also, look at 'Resources' for ideas on where to seek care. Kindly, W.

[@Angels_Are_Real]

Can physiotherapy help with diaphragmatic endometriosis on both sides?

[@Piyalimukh03]

Does this diaphragmatic endometriosis symptoms can be controlled by hormone pills?

[@extrapelvicnotrare7133]

For the majority of individuals hormone suppression can temporarily manage symptoms, but does not cease progressive disease. However it is important to understand all side effects of the medications. There is also a portion of the population whose endometriosis is less progressive, or does not advance in depth over time. If you are located in India, there are a few surgeons who treat diaphragm endometriosis worth consulting. Dr. Abhishek Mangeshikar (in Mumbai) and Dr. Vimee Bindra (in Southern India).

[@Piyalimukh03]

@@extrapelvicnotrare7133 only this two surgeons? No one in kolkata or chennai?

[@NotTheThngsUSaid]

@@extrapelvicnotrare7133is there any way to tell easily if you have a less progressive type? I’m just discovering this disease as I am having a few of the symptoms and it’s definitely scaring me. For the last four months - coinciding with my period- I’ve had pain coming from diaphragm along with referred shoulder pain. But I don’t have a history of any endometriosis symptoms at all. The pain now is bearable but I’m worried hearing that it’s progressive and how there’s not many treatment options. :( tia.