Extrapelvic Not Rare
Extrapelvic Not Rare
  • 22
  • 7 796
The ABC's of Extrapelvic Endometriosis
The ABC's of Extrapelvic Endometriosis was published in electronic format March 2024 during Endometriosis Awareness Month. The book is presented in oversize font with large, colorful images. Content is divided into two sections. The front section provides definitions, anatomy and disease specific information. Readers will learn what endometriosis is, who it affects, where lesions have been found in the body, when symptoms may begin, how it is treated and why little progress has been made to identify its cause, reduce diagnostic delay of, and treatments to eradicate and/or prevent the disease have not transpired. This section is proceeded by an alphabetized images of locations where lesions have been documented throughout the body.
This resource is available in English, Spanish, French and German. The electronic versions of the book can be accessed for FREE at https:.//extrapelvicnotrare.org/new-view-our-ebook/. A hardback version of this resource has been accepted for publication. Our goal is to acquire funds for the publisher to cover all publication fees to include Library of Congress registration, marketting, print and distribute of hardback books for public and academic libraries for tweeners to adults.
Переглядів: 12

Відео

Ms. Brenda Vergara OTD/s Capstone Project: Endometriosis (clip)
Переглядів 514 днів тому
The summer of 2024 EPNR was host-site for a graduate student at the University of the Pacific (Sacramento, California) for fulfillment of their Capstone Project. Ms. Brenda Vergara a student in the Doctor of Occupational Therapy Program was provided guidance and access to resources about endometriosis. This is a video clip of her presentation to faculty, peer students and public audience of the...
2023 Endometriosis Awareness Month Segment on AM Northwest, KATU Ch. 2; Portland, Oregon
Переглядів 130Рік тому
A special three piece segment focus on Endometriosis was aired March 7th, 2023. Host Helen Raptis interviewed her colleague, news anchor Angelica Thornton, who shared her 7 yr journey to receive diagnosis of endometriosis and recent excision surgery. Angelica was accompanied by her surgeon, and current member of the EPNR science advisory board, Dr. Nick Fogelson, MD who shared further details a...
Clip 12
Переглядів 532 роки тому
Clip 12
CLIP 11
Переглядів 472 роки тому
CLIP 11
Clip 10
Переглядів 402 роки тому
Clip 10
Clip 9
Переглядів 392 роки тому
Clip 9
CLIP 8
Переглядів 422 роки тому
CLIP 8
Clip 7
Переглядів 512 роки тому
Clip 7
CLIP 6
Переглядів 392 роки тому
CLIP 6
CLIP 5
Переглядів 852 роки тому
CLIP 5
CLIP 4
Переглядів 462 роки тому
CLIP 4
CLIP 3
Переглядів 1112 роки тому
CLIP 3
CLIP 2
Переглядів 672 роки тому
CLIP 2
Clip 1 EPNR & ICE Endo Summit 2022
Переглядів 1692 роки тому
Clip 1 EPNR & ICE Endo Summit 2022
What is ‘Extrapelvic Not Rare’? What does the EPNR infographic represent? #EPNRCampaign2021updates
Переглядів 443 роки тому
What is ‘Extrapelvic Not Rare’? What does the EPNR infographic represent? #EPNRCampaign2021updates
2021 Endometriosis Awareness Month
Переглядів 793 роки тому
2021 Endometriosis Awareness Month
Diaphragm Endometriosis
Переглядів 4,8 тис.4 роки тому
Diaphragm Endometriosis
Lesson 3 Where has endometriosis been found in the body
Переглядів 1,5 тис.4 роки тому
Lesson 3 Where has endometriosis been found in the body
Introduction and Lesson 1: What is Extrapelvic Endometriosis
Переглядів 2144 роки тому
Introduction and Lesson 1: What is Extrapelvic Endometriosis
Lesson 2 Is Extrapelvic Endometriosis Rare?
Переглядів 2214 роки тому
Lesson 2 Is Extrapelvic Endometriosis Rare?

КОМЕНТАРІ

  • @emilymcfarland8807
    @emilymcfarland8807 2 місяці тому

    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.

  • @Angels_Are_Real
    @Angels_Are_Real 5 місяців тому

    Can physiotherapy help with diaphragmatic endometriosis on both sides?

  • @BABYMAKER4449
    @BABYMAKER4449 7 місяців тому

    Thank you so much!! I cried when I watched these videos! I gave up abt 15 yrs ago on getting a doc to listen. I live in pain and have “touched it out” for a long time. I worry now that my insides are very damaged, but there is still little help or support from medical or society in general(research, community and government resources like Disability, employment that is flexible, etc.) It’s hard to convince people that one day I’m super human with all the strength and abilities that few ppl can compete with, and then around the 1 st of the month (but not always) I can’t breathe, or stand up, or sneeze without excruciating pain! I feverish, and everything is inflamed. I rarely even have actual periods, but sometimes I do and it’s aweful. I hate when people label it as “female problems” as if it’s a NORMAL thing I am just not handling properly. I should just take a Midol and get a grip. I don’t know that I’ll ever get to live in the body of a NORMAL woman, but at least thanks to the internet and women like you, perhaps my daughter will suffer less than I have. I believe in being your own doctor and doing your homework. I have tried to educate a few doctors myself along the way, but many are far to arrogant to listen to someone who “thinks google and web md are equivalent to med school “ I do not think that, however I also am intelligent enough to understand med school does not make one equivalent to God. It is impossible for any doctor to have been exposed to every possible illness, ailment, and condition -nor does every patient always have the same experience when faced with any one or a combination of them. Environmental factors, genetics, even attitude are all variables that doctors seem to often take into account when diagnosing and treating. Mostly in my experience they are guessing, and not even in an educated manor. I don’t think I’m a doctor, however my ability to accurately diagnose conditions has far exceeded most doctors I’ve dealt with-because I pay attention and investigate instead of guessing. Thank you for being a voice maybe they will listen to!

  • @iceskatergirl409
    @iceskatergirl409 7 місяців тому

    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.

  • @natashahutchinson7971
    @natashahutchinson7971 Рік тому

    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

  • @felis4335
    @felis4335 Рік тому

    Thank you so much for your valuable information on this. I have even heard that an endometriosis can occur in the shoulder and cause terrible pain there at least during the period.

  • @Angels_Are_Real
    @Angels_Are_Real Рік тому

    Thank you for this. Bless you. 💕

  • @Piyalimukh03
    @Piyalimukh03 Рік тому

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

    • @extrapelvicnotrare7133
      @extrapelvicnotrare7133 Рік тому

      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
      @Piyalimukh03 Рік тому

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

    • @NotTheThngsUSaid
      @NotTheThngsUSaid Рік тому

      @@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.

  • @bluemoongoddess2370
    @bluemoongoddess2370 Рік тому

    Wow, never thought that endometriosis would be found in the lungs and the brain.

    • @extrapelvicnotrare7133
      @extrapelvicnotrare7133 Рік тому

      Yes, there are about a dozen published cases in the scientific literature with lesions involving the central nervous system (inside the skull and bony spine (central canal). Thoracic Endometriosis is the 3rd most common system impacted by Extrapelvic Endometriosis - with the Diaphragm being the most common location. It is a real thing to cough up blood during menses - when lesions impact the airway system.

  • @thickgoddess1835
    @thickgoddess1835 2 роки тому

    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
      @extrapelvicnotrare7133 Рік тому

      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.

  • @novemberr.8600
    @novemberr.8600 2 роки тому

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

    • @extrapelvicnotrare7133
      @extrapelvicnotrare7133 Рік тому

      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.

  • @vivianh9633
    @vivianh9633 2 роки тому

    thank you for the info!

  • @shan4145
    @shan4145 2 роки тому

    Lol hell to the no!

  • @shan4145
    @shan4145 2 роки тому

    Lol!!!!😂

  • @shan4145
    @shan4145 2 роки тому

    Right?!!! A gynaecologist put me on bc pill and didn’t do shit for any of my pains and said to me don’t worry we will figure this out

  • @Suzigirl87
    @Suzigirl87 2 роки тому

    This is so sad and frustrating!!! Doctors not taking it seriously, and not having any knowledge or interest in learning!!!

  • @derangedpoetess
    @derangedpoetess 2 роки тому

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

    • @extrapelvicnotrare7133
      @extrapelvicnotrare7133 Рік тому

      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.

  • @kimberlysteven4074
    @kimberlysteven4074 3 роки тому

    Hello everyone It's really sad seeing what we go through every single day of our lives and still being treated as crazy at the hospital when we go for complains of the life drainnig pain we are going through but no ears are given to us!! thankful to God it all ends today want to say a big thank you to DR MABOSA HERBAL on UA-cam for curing me from ENDOMETRIOSIS AND HASHIMOTO'S THYROIDITIS with his herbal medications! who knew it was going to work but it did perfectly!! Don't give your body as lab rats for experiment!! go natural with DR MABOSA herbal product I'm a living withness💓

  • @painoftheheart12
    @painoftheheart12 3 роки тому

    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
      @extrapelvicnotrare7133 3 роки тому

      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
      @baileysice2715 2 роки тому

      Hi how are you now, any further forward?

  • @rollandatella
    @rollandatella 3 роки тому

    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.

  • @poeticjustice144
    @poeticjustice144 4 роки тому

    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
      @extrapelvicnotrare7133 3 роки тому

      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.

  • @helterweigates5300
    @helterweigates5300 4 роки тому

    Really interesting - thanks.

  • @donnalp2387
    @donnalp2387 4 роки тому

    Hello I believe I have extra pelvic endometriosis in my belly button. I am in philadelphia and am having a difficulty finding a doctor who can help me. My belly button bleeds everytime during my cycle and it is painful. Why is it so hard for a doctor to believe me? It gives me anxiety and I am up every night trying to figure out what is wrong

    • @autumnhusek8868
      @autumnhusek8868 2 роки тому

      Did you ever get the appropriate help you needed? I’ve just had the same thing start happening to me!