Preview of printable worksheet
Resource Mapping & Mutual Aid — Endo Violence Framework
Community Tools
A worksheet for mapping endo support resources in your local community, organisation, or region. UK examples are included as a starting point — adapt, overwrite, and contextualise in your own work.
Draft — contextualise in your own work
This is a living document created with AI tools and on crip time by Dr Alicja Pawluczuk (HYSTERA). Based on the book Endo Violence: [Co]Defining Endometriosis Related Injustices (2025). Always verify sources. Open source for non-commercial use — credit the original authors. Contact: a.pawluczuk@leeds.ac.uk
Your name / organisation
Location / region
Date
How to use this worksheet
- For each resource category, read the prompts and note what already exists in your community.
- Mark any gaps — services that are missing, inaccessible, or under-resourced.
- Note which endo violence types each resource addresses (listed at the top of each section).
- Use the “Your notes” boxes to plan how you might fill gaps or connect others to existing resources.
- Share findings with peers, practitioners, or advocates — this map is meant to be built collectively.
Support Groups
Finding and connecting with peer support networks — both online and in-person.
Questions to explore locally
- ▸Are there local endo support groups in your area?
- ▸What online communities exist (Facebook groups, Discord, forums)?
- ▸Are there condition-specific meetups (adenomyosis, PCOS, fertility)?
- ▸Who runs the groups — patients, charities, or NHS trusts?
- ▸Are there groups for partners, family members, or carers?
- ▸What about LGBTQ+ inclusive support spaces?
UK examples (starting point)
- Endometriosis UK Local Groupshttps://www.endometriosis-uk.org/find-local-support-group
- Nancy's Nook (Facebook)https://www.facebook.com/groups/nancysnookendo/
- Endometriosis UK Helplinehttps://www.endometriosis-uk.org/get-support
Common gaps to identify
- ○Are there groups for specific communities (e.g., Black women, South Asian women)?
- ○What about support in languages other than English?
- ○Are rural areas served or only cities?
Resources I know about in my area
Gaps I've identified / ideas to fill them
Healthcare Navigation
Understanding referral pathways, specialists, and how to advocate within the medical system.
Questions to explore locally
- ▸Who are the BSGE-accredited endometriosis specialists in your region?
- ▸How do you get a referral to a specialist centre?
- ▸What should you say to your GP to be taken seriously?
- ▸How do you request a second opinion?
- ▸What are the waiting times at different hospitals?
- ▸Which consultants have good patient reviews?
UK examples (starting point)
- BSGE Accredited Centreshttps://www.bsge.org.uk/centre/
- NHS Choiceshttps://www.nhs.uk/conditions/endometriosis/
- Patient Advocate Foundation
Common gaps to identify
- ○What about private vs NHS care options?
- ○Are there patient navigators or advocates available?
- ○How do people share information about good/bad consultants?
Resources I know about in my area
Gaps I've identified / ideas to fill them
Workplace & Benefits
Understanding employment rights, reasonable adjustments, sick leave, and financial support.
Questions to explore locally
- ▸What are your rights under the Equality Act 2010?
- ▸How do you request reasonable adjustments from your employer?
- ▸Can endometriosis be considered a disability?
- ▸What benefits are available (PIP, ESA, Universal Credit)?
- ▸How do you document symptoms for a benefits assessment?
- ▸Are there grants or hardship funds for medical costs?
UK examples (starting point)
- ACAShttps://www.acas.org.uk/
- Citizens Advicehttps://www.citizensadvice.org.uk/
- Endometriosis UK Employer's Toolkithttps://www.endometriosis-uk.org/endometriosis-friendly-employer-scheme
- Turn2ushttps://www.turn2us.org.uk/
Common gaps to identify
- ○How do self-employed people manage endo?
- ○What support exists for those who cannot work at all?
- ○Are there endo-friendly employers lists?
Resources I know about in my area
Gaps I've identified / ideas to fill them
Allies & Accompaniment
How partners, friends, and family can help — including accompanying to appointments.
Questions to explore locally
- ▸Can you bring someone to medical appointments?
- ▸What role can an ally play in the consultation room?
- ▸How do you brief an ally on what to listen for?
- ▸Are there advocacy or note-taking services?
- ▸What resources help partners understand endo?
- ▸How can employers be allies?
UK examples (starting point)
- Appointment Companion Guide
- Partner's Guide to Endometriosishttps://www.endometriosis-uk.org/information-partners-friends-and-family
Common gaps to identify
- ○What if you don't have anyone to bring?
- ○Are there volunteer accompaniment services?
- ○How do single people navigate the system alone?
Resources I know about in my area
Gaps I've identified / ideas to fill them
Education & Courses
Online courses, webinars, and educational resources to understand endo better.
Questions to explore locally
- ▸What free courses exist about endometriosis?
- ▸Are there resources for newly diagnosed people?
- ▸What about courses for healthcare professionals?
- ▸Where can you learn about treatment options?
- ▸Are there pain management programmes?
- ▸What about nutrition and lifestyle courses?
UK examples (starting point)
- Endometriosis UK Webinarshttps://www.endometriosis-uk.org/
- Pain Toolkithttps://www.paintoolkit.org/
Common gaps to identify
- ○Are courses accessible (subtitles, transcripts)?
- ○What about non-English language resources?
- ○Are there resources for different learning styles?
Resources I know about in my area
Gaps I've identified / ideas to fill them
Community Meetups
In-person gatherings, coffee meetups, and local community events.
Questions to explore locally
- ▸Are there regular coffee meetups for people with endo?
- ▸What about craft, yoga, or activity-based groups?
- ▸Are there awareness events you can join?
- ▸How do you find endo-friendly exercise classes?
- ▸Are there retreats or wellness days?
- ▸Can you start your own meetup group?
UK examples (starting point)
- Endo Marchhttps://www.endomarch.org/
- Local Meetup Groupshttps://www.meetup.com/
Common gaps to identify
- ○What about accessibility for disabled attendees?
- ○How do rural communities connect?
- ○Are there events at times that work for people with fatigue?
Resources I know about in my area
Gaps I've identified / ideas to fill them
Self-Advocacy
Tools and scripts for advocating for yourself in medical settings.
Questions to explore locally
- ▸What should you say if a doctor dismisses your pain?
- ▸How do you document your symptoms effectively?
- ▸What questions should you ask before surgery?
- ▸How do you request your medical records?
- ▸What are your rights as a patient?
- ▸How do you make a formal complaint?
UK examples (starting point)
- Symptom Diary Template
- PALS (Patient Advice and Liaison)https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/
- "Please put that in my notes"
Common gaps to identify
- ○What if you freeze up in appointments?
- ○Are there trained advocates who can speak for you?
- ○What about language barriers?
Resources I know about in my area
Gaps I've identified / ideas to fill them
Policy & NHS Updates
Staying informed about healthcare policy changes, NICE guidelines, and NHS updates.
Questions to explore locally
- ▸What are the current NICE guidelines for endometriosis?
- ▸How do NHS waiting list changes affect you?
- ▸What campaigns are pushing for policy change?
- ▸How do you engage with your local MP about endo?
- ▸What research is being funded?
- ▸Are there consultations you can contribute to?
UK examples (starting point)
- NICE Endometriosis Guidelineshttps://www.nice.org.uk/guidance/ng73
- Endometriosis APPGhttps://www.endometriosis-uk.org/endometriosis-appg
- Women's Health Strategyhttps://www.gov.uk/government/publications/womens-health-strategy-for-england
Common gaps to identify
- ○How do you track which hospitals have funding issues?
- ○What about devolved nations (Scotland, Wales, NI)?
- ○How do you find out about clinical trials?
Resources I know about in my area
Gaps I've identified / ideas to fill them