Endometriosis Self-Advocacy Toolkit
Navigate the 9-year diagnosis gap. The scripts, research, and specialist access guide to get excision surgery — not just ablation, not just hormones.
PDFs + Notion templates
Coming soon - currently being refined
Join the waitlist for launch updates. You can start with the free guide in the meantime.
"The average diagnosis takes 9 years. That's 9 years of being told your pain is normal, your scans are clear, maybe try the pill. The research in this toolkit is what I wish I'd had at the start. The scripts are what I wish I'd known to say."
Josie — Rest Reclaimed founder
What's Inside
The Doctor Conversation Script
6 pagesWord-for-word openers, talking points, and responses to the most common dismissals — including "period pain is normal" and "your scan was clear."
Research Evidence Summary
6 pagesAn evidence-based summary of endometriosis — diagnostic delay statistics, why laparoscopy is still required for diagnosis, the central sensitisation mechanism, excision vs ablation, and treatment options. For providers who need to see the literature.
Email Templates for Medical Providers
3 templatesThree ready-to-send templates: requesting a referral to a BSGE-accredited centre or MIGS specialist, requesting excision surgery specifically, and following up after dismissal.
Appointment Prep Checklist
2 pagesWhat to bring, how to open the conversation, the key questions to ask any surgeon before you book, and red flags that mean this is not the right provider.
Endo & Your Nervous System
4 pagesHow untreated endometriosis drives central sensitisation, nervous system dysregulation, and POTS — and why treating endo in isolation often isn't enough.
How to Actually Access a Specialist
4 pagesThe honest guide to navigating insurance, waitlists, BSGE centres, MIGS surgeons, and the excision vs ablation question — because "find a specialist" is not enough.
Notion: Symptom & Pain Tracker
1 templateA Notion database for tracking daily symptoms, pain levels, and cycle correlation — builds the evidence base for your case.
Notion: Medical Appointment Tracker
1 templateLog every appointment with outcome fields, "was I heard?" rating, and flags for dismissals — your paper trail.
This Toolkit Is For You If...
- ✓You've been told your pain is normal or your scans are clear
- ✓You've had ablation surgery and your symptoms came back
- ✓You don't know whether to ask for excision vs ablation — or why it matters
- ✓You can't figure out how to access a specialist who takes your insurance
- ✓You've been waiting months (or years) to be seen
- ✓You want to track your symptoms properly to build your case
- ✓You've been newly diagnosed and don't know where to start
Questions
Is this available yet?
Not yet. The toolkit is still being refined before it goes live. Join the waitlist for launch updates and start with the free guide in the meantime.
Do I need Notion?
The Notion templates are optional. The core toolkit is entirely PDF-based. Notion is free to use if you want the digital trackers.
Is this medical advice?
No — this is a patient advocacy resource based on personal experience and research. It helps you communicate with doctors and understand your options, but it's not a substitute for professional medical advice.
I'm in the US / Australia — will this work?
Yes. The specialist access guide covers both NHS (UK) and US insurance pathways. The scripts and research summary are internationally relevant.
What if I also have PMDD or hypermobility?
Endometriosis frequently co-occurs with PMDD, hypermobility (hEDS), POTS, and CPTSD — they share root mechanisms. Each has its own toolkit, and the Master Patient Advocacy Guide covers the universal advocacy skills that apply across all of them.
This Toolkit Is Coming Soon
Join the WaitlistJoin the waitlist for launch updates. You can start with The Map They Never Gave You in the meantime.
Connected Conditions
UARS
46.6% of hypermobile (hEDS) patients have sleep-disordered breathing — most commonly UARS.
PMDD
Endometriosis and PMDD frequently co-occur and share hormonal and inflammatory mechanisms.
CPTSD
Chronic pain dysregulates the nervous system and amplifies trauma responses — the two conditions reinforce each other.