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18

Apr

Organisations and Support Networks

Posted by steph 

There are several helpful organisations out there for information about endometriosis.

UPDATE IN PROCESS

The World

  • World Endometriosis Research Foundation (WERF) – Main website, Facebook, Twitter
  • World Endometriosis Society (WES) – Main website, Facebook, Twitter

Africa – North

  •  
  •  
  •  

Africa – East

  • Endosisters East Africa (Kenya, Rwanda, Ethiopia) – Main website, Facebook, Twitter, YouTube
  • Association Mon Endométriose Ma Souffrance – Île de la Réunion (MEMS) – Main website, Facebook
  •  
  •  

Africa – Southern

  • The Botswana Endometriosis Foundation – Facebook
  • Zimbabwe Endometriosis Support Network – Facebook

Africa – West

  • Endometriosis Foundation Ghana (EFG) – Main website, Facebook, Twitter
  •  
  •  
  •  

America – North & Central

  • Endometriosis Network Canada – Main website, Facebook, Instagram, Twitter
  • Endometriosis Summit – Main website, Blog, Facebook, Instagram, Youtube
  • Center for Endometriosis Care (CEC)
  • endometriosis.org (They also have a list of further organisations here).
  • Endometriosis Association (EA)
  • Endo Black
  • The Endo Coalition
  • Endometriosis Foundation of America (EFA)
  • EndoQueer
  • Endometriosis Research Center (ERC)
  • Asociación Costarricense Endometriosis (AENDOCR) [Costa Rica] – Main website, Facebook, Instagram
  •  
  •  
  •  

America – South

  • A Endometriose e Eu (Brazil) – Main website, Blog, Facebook
  •  
  •  
  •  

Asia

  • E for Endometriosis Main website, Facebook, Instagtram
  •  
  •  

Europe

  • Endomarch Cyprus – Let’s Talk About It – Facebook, Instagram
  • EndoTalks CZ – Main website, Facebook, Instagram, Youtube
  • Endometriózis Magyarország – Main website, Blog, Facebook, Instagram, Youtube
  • Italian Endometriosis Foundation – Main website, Facebook, Instagram, Youtube
  •  
  •  
  •  

Oceania

  • Endometriosis Australia – Main website, Blog, Support Groups, Facebook, Instagram, Twitter, Vimeo, Youtube
  • Endometriosis New Zealand – Main website, Facebook, Instagram, Twitter, Youtube
  •  
  •  
  •  

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Don't Have Endo? Please Read!

  • What Is Endometriosis?

  • The Letter From Survivors

  • Public Service Announcement!

  • We Are Not Seekers

  • What I Should Have Said

  • "...but have you tried..."

  • Sick Humor: The top ten worst
    suggestions commonly given to
    someone with a chronic illness


  • Our Life In Comics

Important Pages

  • Endopaedia

  • Research and Medical Journals

  • Myths about Endometriosis

  • YouTube Video Blogs of Yore

  • Applying For Disability

  • Be Aware!

  • Endo and Menopause

  • Is Endo A Cancer?

  • Job Discrimination

  • Fallen Endo Siblings

Mankoski Pain Scale

0 - Pain Free

1 - Very minor annoyance - occasional
minor twinges. No medication needed.

2 - Minor Annoyance - occasional
strong twinges.
No medication needed.

3 - Annoying enough to be distracting.
Mild painkillers are effective.
(Aspirin, Ibuprofen.)

4 - Can be ignored if you are really
involved in your work, but still
distracting. Mild painkillers relieve
pain for 3-4 hours.

5 - Can't be ignored for more than 30
minutes. Mild painkillers reduce
pain for 3-4 hours.

6 - Can't be ignored for any length of
time, but you can still go to work and
participate in social activities.
Stronger painkillers (Codeine,
Vicodin) reduce pain for 3-4 hours.

7 - Makes it difficult to concentrate,
interferes with sleep. You can still
function with effort. Strongest
painkillers relieve pain (Oxycontin,
Morphine)

8 - Physical activity severely limited.
You can read and converse with effort.
Nausea and dizziness set in as factors
of pain. Stronger painkillers are
minimally effective. Strongest painkillers
reduce pain for 3-4 hours.

9 - Unable to speak. Crying out or
moaning uncontrollably - near delirium.
Strongest painkillers are only partially
effective.

10 - Unconscious. Pain makes you
pass out. Strongest painkillers are only
partially effective.

© Andrea Mankoski

Organisations

  • Endo Black

  • endoQueer

  • The Endo Coalition

  • endometriosis.org

  • World Endometriosis Society

  • Endometriosis UK

  • World Endometriosis Foundation

  • Center for Endometriosis Care

  • Endometriosis Research Center

  • Endometriosis Association

  • Endometriosis Foundation of America

  • Worldwide EndoMarch

  • Worldwide Organisations and Support Networks (ongoing update)

Endo Products


  • Naturally Hip
    - cloth menstrual pads

  • Pelvic Pain Solutions
    - Microwavable corn-filled cloth
    heating pads.


  • Endo Awareness swag
    - As found on Etsy

Archival Blogroll

 (Blogs I connected with from the early days)
  • Antonia's Epic Endo Journey
  • Canadian Girl In Pain
  • Chances Our
  • Chronic Healing
  • Dear Thyroid
  • Endo Empowered
  • Endo Friendo
  • Endo Times
  • Endo Trauma
  • Endo Writer
  • Endometriosis: The Silent Life Sentence
  • Field Notes from an Evolutionary Psychologist
  • Foxy In The Waiting Room
  • Get Well blog
  • I Will Not Suffer In Silence
  • Lupron Journal
  • My Endometriosis Story – Lily Williams Art
  • My Journey With Endometriosis
  • My Life With Endo & Infertility
  • Pop Goes The Feasible
  • Reading List & Resources for chronic pain, including endometriosis
  • Resilience
  • Sallie Speaks
  • SansUterus
  • Surviving Endo
  • The Ins and Outs of Endo
  • Whispered Words …
  • Yellow Paper Dress

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Recent Post

  • Trans Endo Siblings – I see you.
  • Are redheads more prone to Endometriosis?
  • Did you know? Autoimmune Diseases Tend To Cluster
  • Finding Others Like Us On The Web
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  • Endometriosis In Transgender Men Is Still Poorly Understood
  • Stats on Endometriosis
  • Worldwide Virtual Endometriosis Conference
  • Did you know? Racism led to the belief that Endometriosis only develops in white career women who delay childbirth.
  • The Mankoski Pain Scale

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