Living With Endometriosis

  • Home
  • [About]
  • [What Is Endometriosis?]
  • [Support]
  • [Endo Organisations]
  • “…but have you tried…”
  • About Me
  • Alternative Medicine
  • Applying for Disability
  • Be Aware
  • Endometriosis and Menopause
  • Fallen Endo Siblings – A Memorial Page
  • Filing for Medicare health benefits
  • Filing for Social Security Disability Insurance (SSDI)
  • Hormonal Suppression
  • In The News – Pharmaceuticals Can Be Dangerous
  • Is Endometriosis A Cancer?
  • Job Discrimination
  • March is National Endometriosis Awareness Month
  • Myths About Endometriosis
  • Old Wives’ Tales
  • Online Support For Endometriosis
  • Organisations
  • Our Life In Comics
  • Pain Medication
  • Pharmaceutically-run Marketing Websites
  • Public Service Announcement
  • Research and Medical Journals
  • Surgery
  • We Are Not Seekers
  • What I Should Have Said
  • What Is Endometriosis?
  • YouTube – Endometriosis Video Blogs

10

Nov

Endometriosis Patients Demand Awareness

Posted by steph 

Endometriosis Patients Demand Awareness, Research, and Better Treatments: Sufferers Share What Works
Written by Editor Choice
Thursday, 06 November 2008
Often misdiagnosed and left to temporary treatment options, Endometriosis patients are now feeling more empowered than ever to spread awareness for the under-researched condition. Dancing with the Stars performers Julianne Hough and Lacey Schwimmer made publicly respected decisions to announce their current struggles with Endometriosis despite advisers’ recommendations to cover it up. One recent user commented to Hough on her website, “I think that people dont understand the pain we go through on a daily basis and think we are making it up. When I went back to work people actually understood my condition better because of you.” Women around the world are coming together to stand up for awareness and help each other online.

Endometriosis patients now have more than a chat room or discussion board, they are crowding around http://www.curetogether.com/Endometriosis/ to quickly find the most recent reviews on treatments, compare symptoms, and discover related conditions anonymously. It is estimated there are 89 million women world-wide who suffer from Endometriosis. Julia Meggitt, one of the members that come from 40 different countries at CureTogether’s research forum, commented on immediate benefits from the data: “It was very interesting to see all of the other symptoms that other women were having. It’s nice to know I’m not alone or crazy.” By checking-off symptoms and treatments, members can see automatic percentages of how they compare and instantly learn new things from other patients. While immediate benefits are gained, the anonymous aggregate data contributes to future studies. The site promises even more cures and better treatments with an upcoming update to let patients graph symptoms over time.

CureTogether is about real-time data and crowd-sourcing cures as the website itself clearly states: “We believe the secrets to understanding and ultimately curing diseases are locked away inside the bodies of each person who has a condition.” The site recently added a new feature to allow people to share what exacerbates the pain, such as childbirth, and to connect related conditions such as Fibromyalgia. Free tools not only enable patients to take control of their health, but also empower them to be their own researchers. In no way does CureTogether circumvent doctor’s orders, but with healthcare continuing to fail endometriosis sufferers, more and more patients are turning to research and reaching out to help one another.

Patients interested in comparing symptoms, discovering new treatments, tracking their condition, and further researching cures, please visit: http://www.curetogether.com/Endometriosis/

Published in News article

Related Articles

  • France formally recognises endometriosis as ‘long-term condition’ (March 26th, 2022)
  • 10 Research-Backed Truths About Endometriosis (March 13th, 2022)
  • Endometriosis patients suffering extreme pain due to pandemic treatment delays and lack of expertise (March 9th, 2022)
  • Coronavirus (COVID-19) and Endometriosis (March 27th, 2020)
  • For transgender men, pain of menstruation is more than just physical (January 18th, 2020)

No user responded in this post

Subscribe to this post comment rss or trackback url

Search

Don't Have Endo? Please Read!

  • 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

  • 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 take care of it.
(Aspirin, Ibuprofen.)

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

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

7 - Makes it difficult to concentrate,
interferes with sleep. You can still
function with effort. Stronger
painkillers are only partially effective.

8 - Physical activity severely limited.
You can read and converse with effort.
Nausea and dizziness set in as factors
of pain.

9 - Unable to speak. Crying out or
moaning uncontrollably - near delirium.

10 - Unconscious. Pain makes you
pass out.

© Andrea Mankoski

Organisations

  • Endometriosis Association

  • Endometriosis Research Center

  • endometriosis.org

  • World Endometriosis Foundation

  • Center for Endometriosis Care

  • World Endometriosis Society

  • EndoBlack

  • EndoQueer

  • The Endo Coalition

  • Endometriosis Foundation of America (EFA)

Symptom Tracking

  • CureTogether.com
    - Compare symptoms with people like you,
    Find treatments that work, optimize your
    health


  • PatientsLikeMe.com
    - Real-time pain mapping, monitoring,
    analysis. Community.


  • MyMonthlyCycles.com
    - free personalized tools to track, monitor,
    and manage your mo nthly menstrual cycles!

Endo Products


  • Naturally Hip
    - cloth menstrual pads

  • EndoFEMM
    - Microwavable corn-filled cloth heating
    pads. (mention you saw them here and get
    10% off your order!)


  • Endo Awareness swag
    - As found on Etsy

Blogroll

  • 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

Categories

  • Administrative (12)
  • Alternative medicine (4)
  • Autoimmune (5)
  • Biographies (13)
  • Biology (15)
  • Black Endo Health (5)
  • Books (3)
  • Cancer risk (19)
  • Centers for Disease Control (1)
  • Chronic Pain (7)
  • Diet (9)
  • Doctors (7)
  • Endometriosis Awareness (148)
  • Featured (43)
  • Food and Drug Administration (6)
  • Government-involvement (9)
  • Heart risk (1)
  • Hormone Replacement Therapy (HRT) (3)
  • Hysterectomy (5)
  • Infertility (1)
  • Inspirational (3)
  • Insurance industry (3)
  • Malpractice (4)
  • Medical industry (5)
  • Menopause (1)
  • News article (105)
  • Outrageous (20)
  • Pain management (3)
  • Pharmaceuticals (13)
  • Pseudoscience (1)
  • Research (75)
  • Suicide (2)
  • Support and networking (8)
  • Tips and advice (11)
  • Trans Health (8)
  • Uncategorized (10)
November 2008
S M T W T F S
 1
2345678
9101112131415
16171819202122
23242526272829
30  
« Jan   Dec »

Archives

  • March 2022 (9)
  • April 2021 (1)
  • March 2021 (15)
  • November 2020 (1)
  • March 2020 (2)
  • January 2020 (2)
  • March 2019 (7)
  • March 2018 (8)
  • March 2017 (12)
  • April 2016 (1)
  • March 2016 (8)
  • February 2016 (1)
  • August 2015 (1)
  • March 2015 (17)
  • December 2014 (1)
  • July 2014 (1)
  • April 2014 (2)
  • March 2014 (3)
  • May 2013 (1)
  • March 2013 (31)
  • July 2012 (1)
  • April 2012 (2)
  • March 2012 (9)
  • February 2012 (5)
  • January 2012 (2)
  • December 2011 (1)
  • November 2011 (1)
  • August 2011 (1)
  • July 2011 (1)
  • March 2011 (3)
  • January 2011 (5)
  • December 2010 (3)
  • November 2010 (1)
  • October 2010 (1)
  • September 2010 (2)
  • August 2010 (2)
  • July 2010 (2)
  • May 2010 (1)
  • April 2010 (8)
  • March 2010 (4)
  • February 2010 (10)
  • January 2010 (2)
  • December 2009 (1)
  • November 2009 (4)
  • October 2009 (2)
  • September 2009 (3)
  • August 2009 (4)
  • June 2009 (2)
  • April 2009 (2)
  • March 2009 (38)
  • February 2009 (9)
  • January 2009 (15)
  • December 2008 (12)
  • November 2008 (8)
  • January 2008 (1)

Syndication

  • Add blog to any reader

  • Comments RSS

Recent Post

  • Trans, gender-diverse people with endometriosis fight ‘double battle’ against pain and lack of recognition
  • Transgender People with Endometriosis Often Suffer in Silence
  • Font issues with the website
  • France formally recognises endometriosis as ‘long-term condition’
  • Worldwide Endometriosis March
  • 10 Research-Backed Truths About Endometriosis
  • Endometriosis patients suffering extreme pain due to pandemic treatment delays and lack of expertise
  • Endometriosis pain and epithelial neutrophil activating peptide-78 levels
  • Honouring Henrietta Lacks
  • Vaccine / menstruation study

Recent Comments

  • admin in Honouring Henrietta Lacks
  • Kathy in A Breakthrough In A Disease That No One Likes To T…
  • Jenn in Unbelievable doctors in the 21st century
  • admin in Peggy Santa Maria - a saint to endo sisters!
  • That Girl with Endo in Peggy Santa Maria - a saint to endo sisters!
  • I Will Not Suffer In Silence »… in Peggy Santa Maria - a saint to endo sisters!
  • That Girl with Endo in Peggy Santa Maria - a saint to endo sisters!
  • steph in Peggy Santa Maria - a saint to endo sisters!
  • JennM in Peggy Santa Maria - a saint to endo sisters!
  • I Will Not Suffer In Silence »… in Genetic variants on chromosome 1 and 7 more likely…
© 2008 Living With Endometriosis is proudly powered by WordPress
Designed by Roam2Rome