Helpful Resources for Endometriosis
The Internet can be a minefield when you are looking for specific information about a medical condition. It’s difficult to know who to trust and what resources are reliable. If you’re newly diagnosed or a long-time endo warrior, we’ve pulled together a list of useful resources for endometriosis that offer support and advice.
Table of Contents
Books
Author; Dr Iris Orbuch and Dr Amy Stein
Recommended by NHS physiotherapists, the book teaches endometriosis sufferers how to reclaim their lives, within the workforce, mentally and physically. The book is written by a surgeon and physical therapist both of whom have witnessed first-hand the harm and suffering endometriosis can cause.
Author; Emma Barnett
The journalist and broadcaster has spoken openly about her battle with endometriosis and fertility. Now, the BBC Radio 5 presenter has penned a book using her own endometriosis journey as a catalyst to discuss a wide range of issues around periods and ignite conversations.
Author; Professor Andrew Horne and Carol Pearson
Written by a renowned clinical expert and professor of Gynaecology and Reproductive Sciences, and a group supporter and trustee at Endometriosis UK, the book is an insightful read for those who are newly diagnosed with endometriosis. It outlines how the disease is diagnosed, treated and how to manage symptoms.
Author; Andrew S Cook and Danielle Cook
Diet is often hot topic amongst the endometriosis community and while diets can be trial and error, this book provides a good starting point. It explains the medical side of endometriosis, how lifestyle can impact the disease and how to strengthen your body and improve symptoms by following a scientifically based diet designed to target contributing factors of endometriosis.
Emma Kemsley – Let’s talk diets. Keto, Gluten-free, dairy-free, sugar-free and the rest. The first thing a lot of people say when they find out I have endometriosis is “Have you tried going vegan? Cutting out soy? Going raw? Keto?
Apps
Available to download on Apple App Store
Flutter is the app for painful periods. The day-to-day tracker allows users to record their physical and mental symptoms and keep tabs on their period and ovulation. There are handy tools for self-diagnosis, educational articles on endometriosis, nutrition videos and a pain management section that suggests different exercises and relaxation techniques. You can easily log medication to help you stay organised and set a reminder for birth control too.
Available to download on Apple App Store & Google Play
The go-to period app for those who suffer from endometriosis, painful periods and PCOS. The app was launched by Syrona Health, a virtual gyno health clinic that specialises in support for women with endometriosis. The app offers a range of tools from logging symptoms, a period flow, hormone and pain tracker, access to specialist support, a curated shop of helpful products and doctor-approved health insights. The recorded data suggests personalised recommendations and health tips so you can better understand your symptoms and how to manage them. There’s also an online community where users can join in discussions, share tips and meet others on a similar journey.
Websites
The UK’s leading charity for endometriosis awareness and support. The website is full of useful information about a diagnosis, FAQs, research and real-life stories. It’s a great website for finding out more about the condition and getting the right help. There is a helpline and list of local support groups across the UK. The charity regularly shares personal stories, events and care information on its social media too – bringing together a community of like-minded women. Click here to find you local support group.
The global platform is a news forum featuring clinical and scientific articles, research, studies and support resources. The treatment section provides a helpful and detailed list of options for managing symptoms.
Endometriosis South Coast- charity number #1186203
Endo South Coast is an inclusive charity set up to help people along the South Coast who are going through the diagnosis stages of Endometriosis and Adenomyosis or have been diagnosed with the conditions.
They aim to create a safe space for all people with the condition regardless of race, gender, or religion.
This disease does not discriminate and neither do the people who run this charity.
Severe endometriosis should be treated at a BSGE accredited specialist centre. This means the hospital have a clinical team dedicated to endometriosis. The team includes a skilled endometriosis surgeon with experience of laparoscopic excision of endometriosis, endo nurses and supporting surgeons such as a colorectal surgeon and urologist. You can search for your nearest BSGE credited centre via the website.
www.nhs.uk/conditions/endometriosis
If you suspect you have endometriosis or you’re newly diagnosed, the NHS website should be your first point of call. It provides a list of symptoms, guidance on when to see a GP, treatment options and how to live with the condition. The NHS and Endometriosis UK are working together to improve diagnosis times and support.
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https://www.youtube.com/watch?v=Ba9ebkTTYeE&t
Instagram Accounts
An honest and satirical diary of a woman and her uterus. The account discusses the trials and tribulations of dealing with endometriosis, adenomyosis, vaginismus and vulvodynia.
You can read more on the blog at www.theendomonologues.com/
Following years of debilitating pain, multiple surgeries and hormone therapy including chemical menopause to treat endometriosis, Liz Coomb, from East London, has set-up Wonder Warriors to support women and people affected by the disease in creative ways.
She’ll be hosting weekly wellbeing sessions every Thursday evening at the Jack Dunning Community Hall, in Homerton, London.
There are plans to host regular Warrior Treats; an all-day event for endo sufferers to take time for themselves with creative and relaxing activities such as meditation, yoga, singing, healthy food and sharing in a supportive space. The first event will be held on 11 September at Chats Palace Arts Centre in East London.
Further dates and locations will be announced soon. Click here for more details.
Founded by Carla Cressy, who has personally experienced the devastating side effects of severe endometriosis, the page brings together a collection of real-life stories, trending topics, campaigns and endo celebrity news.
Anna shares her journey as a stage 4 endo warrior and life with a stoma bag. Her account is honest and raw, detailing the ups and downs of endo. She hosts ‘Menstrual Monday’ on IGTV where she discusses period-related topics with other endo sufferers.
Katy Johnson is a Capital Scotland presenter and host of the podcast ‘Ovary Reacting’ which discusses periods and living with endometriosis. She is an ambassador for Endometriosis UK and is an advocate for living well with endometriosis.
An ambassador for Endometriosis UK, Abbie documents her life with endometriosis highlighting important topics such as mental health and relationships.
Tanya captivates with her endometriosis story and diagnosis which led to an ileostomy bag, she has named ‘Lola’. Her positivity is inspirational as she continues to raise awareness to normalise all bodies.
