A researcher's top picks for endometriosis information resources [updated]
Our understanding of endometriosis is constantly evolving. Thus, information sources can become outdated quickly. Even the most reputable websites can feature outdated information or may not be completely evidence-based. Take everything you read with a grain of salt!
- This blog: (Shameless self-promotion!) If you’ve been diagnosed with endo chances are you’ve Googled the crap out of it (because you’re human) and have come across much of the same thing. I try to write about things that are not well covered online. For example, see my posts on the endo basics, endometriosis and fertility, and what a women's health physio can do for you.
- Endometriosis.org: This is a global endometriosis website. It doesn’t always use woman-centred language but it’s the best I’ve come across in terms of being evidence-based and simple to read.
- Jean Hailes' Endometriosis tools: These are a great set of tools featuring a symptom diary (great for tracking your symptoms and bringing to appointments), information for women (one of few to describe the role of healthcare professionals beyond a GP and gynaecologist), and information for health professionals (this may be useful if you encounter a doctor who isn't well versed in endometriosis).
- The Guardian's collection of endometriosis articles: This news outlet has been doing some fantastic reporting on endometriosis. They are particularly good at privileging women's experiences and perspectives.
- PubMed: This is a database of scientific journals. If you like to read medical journal articles about endometriosis this is a great place to access them. For most papers only the abstract is publicly available but this can still give you a lot of information. (Tip: In the world of Science we typically need several high quality studies to demonstrate the same finding before we can make a claim about it, so finding one study with an amazing/horrifying finding isn't likely to mean anything conclusive.)
- Lennyletter.com: This is a weekly newsletter started by Lena Dunham and her colleague Jenni Konner. They recently did a whole issue on endometriosis (Lenny Letter no. 8) that’s definitely worth checking out. It's not completely evidence-based but it's great to hear women's perspectives and the doctor featured also writes a lovely warm piece.
- Endometriosis Update: this blog summarises clinical research into endometriosis. It can be quite technical at times and I don't always agree with how study findings have been interpreted and presented by the authors but it's a great resource nonetheless.
- Twitter: The endometriosis hashtag (#endometriosis) has lots of interesting tweets from women sharing their experiences to organisations tweeting the latest research.
- Activist and support groups: There are lots of community and support groups online; some women find them to be helpful information resources while others do not. Popular ones include EndoActive, Endometriosis Australia and Endometriosis NZ. These organisations all have active Facebook pages and some have private discussion groups where you can connect with other women who have endometriosis.
- Endometriosis and Pelvic Pain by Susan Evans and Deborah Bush: This book explains endometriosis using language that is easy to understand and respectful to women – a rare find! Some parts are outdated given that it is a book but it is a useful starting point for many topics.
- Manage Your Pain by Michael Nicholas and colleagues: This book is not specific to endometriosis but much of it is relevant. It describes what pain is, the different types of pain, and suggests things you can do to manage it.
Image via Death to the Stock Photo
Image via Death to the Stock Photo