top of page

Resources for people with suspected endo*

Cysters

An inclusive space that supports individuals dealing with menstrual, maternal and mental health issues, often addressing sensitive and personal topics.

https://cysters.org/our-mission/

 

Endo Black, Inc.

A “black-women-led organization advocating for African American women and women of color living with endometriosis.”

https://www.endoblack.org/

 

The Endometriosis Network Canada

https://endometriosisnetwork.com/

 

Questions to ask your primary care provider if you suspect that you have endometriosis and are seeking a diagnosis, or have a diagnosis and are seeking care: https://static1.squarespace.com/static/5e4f2ddb9f932e3dc4bee91e/t/5e5d8ec4cbece00d7cc37c31/1583189701633/Questions_To_Ask_Your_Doctor_About_Endometriosis_Nov_2013_TENC.pdf

 

TENC twice-monthly Canada-wide endometriosis support group over Zoom for those living with endometriosis: https://endometriosisnetwork.com/support-groups/#virtual-support

 

ENDOMETRIOSIS UK

The UK’s leading charity for all those affected by endometriosis, determined to ensure that everyone gets prompt diagnosis and the best treatment and support.

https://www.endometriosis-uk.org/

​

endometriosis.org

A global forum for news and information about endometriosis.

https://endometriosis.org/

​

Extrapelvic Not Rare

Provides evidence-based information and resources about areas regularly omitted from conversations about endometriosis.

https://extrapelvicnotrare.org/

 

EndoAct Canada

https://endoact.ca/

 

EndoAct Endometriosis Stories Interactive Map: Bringing together our stories to help other people in Canada, including elected officials and policy makers, understand the impact of endometriosis across the country

https://endoact.ca/stories/

 

endoQueer

A private Facebook group for LGBTQIA+ individuals with endometriosis.

https://www.facebook.com/groups/1655289847828418/

 

Endo Knows No Gend-O

A private Facebook group for people who have endometriosis and/or PCOS. Explicitly trans inclusive/ forward.

https://www.facebook.com/groups/117791448846494/

​

EndoFound: Endometriosis Foundation of America

The Endometriosis Foundation of America (EndoFound) strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research.

https://www.endofound.org/endometriosis

​

ESHRE Endometriosis Guideline (Patient version 2022)

This guideline offers best practice advice on the care of women with endometriosis, including recommendations on the diagnostic approach and treatments for endometriosis for both relief of painful symptoms and for infertility due to endometriosis.

https://www.eshre.eu/Guideline/Endometriosis

*

Specific resources for people with a clinical or suspected endometriosis diagnosis are limited.

 

Many of the listed resources use non-inclusive language such as 'women with endometriosis'. This does not reflect realities of the disease, which can affect people of any gender, sex, sexuality, race, ethnicity, culture, age, and size. See listed sources under RESEARCH for more information.

I HAVE SUSPECTED ENDO – NOW WHAT?

bottom of page