Hello! Together with some team lab members, I’m running at the Edinburgh Marathon festival and I’m fundraising money for @endo1000.bsky.social Here’s my JustGiving page, if you’d like to donate: www.justgiving.com/page/bert-ma...
Curious to know more about what we do?
We’re more active over on our Instagram page @endo1000project, and you can always see updates and sign up to our newsletter on our website endo1000.com🩸
A photo of Ffion in rugby uniform TEXT: "Considering its my job to excessively exercise everyday, I become so anxious as I have to mentally prepare myself in case I flare. Also, majority of our staff are men, who do not have an understanding of female health, let alone endometriosis, so it is difficult to manage it during training and manage people's perceptions. "
A photo of Lyndsey TEXT: "I’ve missed days of school and university due to pain for as long as I can remember. It got to the point I was probably unemployable and possibly wouldn’t be able to hold down a job. I was unreliable, I was throwing up at work, and I couldn’t concentrate. I don’t know how I’ve made it through the day sometimes."
Endometriosis can end careers.
A photo of Rebecca TEXT: "It has directly caused me to change careers, as I am unable to work long hours on my feet as a chef anymore. Symptoms and flare-ups are so unpredictable. You have to think 3 steps ahead, like not taking a role that will involve extensive travel, even if you feel well when you apply, because in 6 months you might not be able to walk or travel."
When did you last have to plan months ahead for work? ☝️
More of our ambassadors, Ffion, Lynsey and Rebecca, have shared their workspace stories. Starting a conversation can make a difference. It's time to #TALKEndo.
TEXT: Endometriosis can end careers.
A photo of ambassador Candice. TEXT: "Endometriosis has clipped my professional wings, it's impaired my career growth, interfered with professional relationships in the workplace."
A photo of ambassador Phoebe. TEXT: "Suffering from Endometriosis as a working woman can force you to leave/miss work. Due to a lack of research and visibility around Endometriosis, in the past I have had to constantly defend that my disability is more than just your average period pain."
A photo of Neroli. TEXT: "Endometriosis has impacted me severely with my symptoms causing me to miss a significant amount of school each month,and any aspirations I had for a dance career had to be reconsidered as I wasn’t able to keep up with the rigorous schedule and demands of my dance academy."
#Endometriosis doesn't just affect personal life.
Here are some of our ambassadors, Candice, Phoebe and Neroli, talking about their journeys through work and education. It isn't just work, it's a challenge, which is why we need to #TALKEndo - it can end careers.
Text: Retrograde menstruation is when period blood flows backwards (inside your pelvis) rather than flowing out during your period The text is laid out in a shape of a uterus, there is a blood drop coming out the bottom
Text: 80-90% of people who have periods experience retrograde menstruation, yet only 1 to 10 will go on to develop endometriosis
Text: What does this have to do with endometriosis? By the blood and cells traveling through your Fallopian tubes into your pelvis it could contribute to endometrial tissue growing on your pelvic organs
Text: So is it the cause of endometriosis?! Nope - it can cause endometrial tissue to grow outside of the uterus but it is not the definitive cause of endometriosis, especially as endometriosis isn't just found in the pelvis
Retrograde menstruation - what's it got to do with #endometriosis? ⬇️
What does an ideal #endometriosis diagnosis look like, and what can we do now? ✍️
At the end of August we joined Lucy Whittaker, Nicola Boydell and Marie Larsson for the 'Diagnostic Futures in Endometriosis' workshop.
A huge thank you to everyone who gave their time to this event! ❤️
Need something to read in the sunshine this weekend? How about taking a look at these 3 books about women's health? ☀️🩸
Which of these are you picking up? 👇
Diagnostic futures in endometriosis workshop 28 Aug 10-3pm Edinburgh futures institute 1 Lauriston Pl, Edinburgh About the event: The session will bring together a diverse group of stakeholders to explore how the diagnostic process is currently experienced and imagined, and to collectively envision more desireable diagnostic futures for endometriosis. This workshop will contribute to ongoing work to centre lived experience in innovation and improvement within reproductive health and diagnostic care.
What is the ideal future of endometriosis diagnosis?
You can take part in this creative and interactive workshop, ran by the EXPPECT research team. Link in our bio to sign up ✍️
Did you catch our ambassador Rajini Vaidyanathan on BBC Radio 2 talking about her experience with endometriosis?
We were delighted for the shout out and hope that the open conversation educates and raises awareness for endometriosis💛
You can catch up on the conversation now on BBC sounds!
A small spaniel licks the inside of an ENDO1000 branded reusable coffee cup
A small spaniel bite the side of an ENDO1000 branded reusable coffee cup
ENDO1000 supporters come in all shapes and sizes 🐾
Want to make our day paw-fect? You can pop us a little donation at the link in our bio.
Every penny will help us recruit more participants for our research into #endometriosis 🩸
Have you got your tickets yet? 🎟️
Text: What are the different types of endometriosis? Wait... there's more than one?
Text: Peritoneal endometriosis is mainly found in the pelvis, and surrounds the pelvic organs like the uterus and bladder
Text: Ovarian endometriosis is when you find endometriosis cysts on the ovaries, this is most commonly where you find 'chocolate cysts' (aka endometrioma)
Text: Deep infiltrating endometriosis just like peritoneal endometriosis, but is embedded deeper It is usually found in organs around the pelvis This can sometimes cause a lot of scar tissue and adhesions
Welcome to our new series 'What's that?' Wednesday!
Every Wednesday we're going to #TALKendo by answering and de-mystifying questions you might have about endometriosis.
First up, what are the three different types of #endometriosis?
Going to be in Edinburgh this August? Come to see Jessica Knappet on the 19th, in support of the amazing @endo1000.bsky.social www.eventbrite.co.uk/e/perfect-da... #Comedy #Endometriosis #Research
Looking for shows this festival season? Comedian Jessica Knappett is collaborating with IRR's @endo1000.bsky.social and performing a live recording of her podcast Perfect Day on Tues 19 Aug!
All ticket sales support our endometriosis research. Get yours today:
www.eventbrite.co.uk/e/perfect-da...
Our Co-Director Andrew Horne recently visited Professor René Wenzl at the University of Vienna, delivering a lecture on innovative approaches to managing endometriosis as part of his Adjunct Professor appointment. 🤝
The cover image of the Perfect Day podcast. It is a bright blue background with a photo of Jessica in the middle and 'Perfect Day' in pink.
On a bright blue background in pink wording the text reads: Live podcast with special guest. Tue 19 Aug, 3.30pm, St Cecilia's Hall in support of ENDO1000'
We’re so excited to announce that we are collaborating with Jessica Knappett for her live recording of the Perfect Day podcast, and you can get tickets RIGHT NOW from the link in our bio 🎟️
Join Jessica and her special guest at this live recording, with all ticket sales supporting ENDO1000.🩸
Two women hold reusable coffee cups with red lids, the ENDO1000 logo is on the body of the cup and is facing directly to the camera.
Did you know we take donations big and small?
The price of your morning takeaway drink could make all the difference! Those regular, small donations are helping us to reach our target.
Find out more about how to donate at the link in our bio ❤️
Text: Exclusive news and updates, straight to your inbox There is an open blue envelope with a newsletter sticking out showing the ENDO1000 logo.
Did you know we have a newsletter? 📨
If you want all your updates in one place (and exclusive first-looks at things we have coming up) make sure to head to our website and sign up (link in our bio)! Our first edition is coming soon.
Meet the ENDO1000 team!
Doug Gibson, Lead in Discover Science, explains what is happening in some of our research behind the scenes 🔬
Interested in staying up to date with research like this? Sign up to our mailing list and keep an eye on our website (links in our bio!)
Text: The objective of the ENDO1000 project is to accelerate discovery and advance data driven research into endometriosis diagnosis and treatment.
Text: Ok, so what is ENDO1000? The background is navy with red silhouettes of women.
Text: A UK-wide research project that will recruit and collect data from 1000 participants with known or suspected endometriosis and, with their permission, use tools to track their disease and health metrics over a two year period.
Text: The collated data will allow research into the development of personalised care for women with endometriosis - transforming the lives of millions There is a red silhouette of a woman walking
We thought we should probably re-introduce ourselves 👋
We're ENDO1000, and here is a run down of who we are and what we want to do.
You can always find more information about what stage the project is in on our website, or follow us if you haven't already to keep up to date!
Ever had people ask 'what is endometriosis anyway?' because we definitely have! 🩸
We're hear to #TALKendo and breakdown a bit more about endometriosis and why we're researching it. If you want to read more about endometriosis, or our project, head over to our website (link in bio)
Text: "I decided to run for ENDO1000 because I know how many people are affected by endometriosis and how little support or understanding there still is out there. Knowing that the funds I've raised can help one more person join the research feels amazing - it makes all the tough training runs and sore legs totally worth it."
It's been a week since the Edinburgh Marathon Festival! 🏃
Dayna, who professes herself as 'not a natural runner', speaks about why she chose to join the marathon relay for ENDO1000, despite the tough training. Head to our website for more about fundraising, or donate at the link in our bio!
“Women with endometriosis can lose between 1.9 and 15.8 work hours per week managing painful and fluctuating symptoms”
Could the new UK employment rights bill make an impact on working with endometriosis? We hope so 🤞
Read the article 👇
Three runners stand on a path with their arms around each other, they are smiling and have medals around their necks. They are wearing red ENDO1000 tops.
Four runners stand with their arms around each other smiling. They are all wearing red ENDO1000 tops.
Yesterday our runners took on the Edinburgh Marathon Festival relay, tackling rain, wind, hail, before finishing with sunshine as they crossed the finish line and collected their medals 🏅
So far they have raised an incredible £1,580, donate at the link in our bio!
Fantastic talk from Dr Lucy Whitaker from Centre for Reproductive Health at University of Edinburgh at #wce2025 presenting work from our PhD student Katherine Edgley on the use of wearable technology in #endometriosis @edinuni-irr.bsky.social @endo1000.bsky.social
A photo of Andrew stood at the podium with a microphone, his name is on the board behind him. Text: It takes on average 8 to 10 years in the UK for someone to receive a diagnosis. During that time, many are told their pain is ‘just part of being a woman’, or that it’s in their head.
When co-head, Andrew Horne, took to the stage he shared the importance behind our project, and the disparity of research in to women's health.
We have already made an amazing amount of progress, but we still need your support. Find out more at www.endo1000.com/...
Priscilla took the stage at our charity dinner to talk about how ENDO1000 will be the key to better diagnosis times so that less women have to spend years in pain.
We raised an incredible £22,000 from our dinner but we still need your help to reach our goal, link in our bio!
We show #endometriosis treatments are failing to address fatigue, a key quality-of-life issue
🔹 2,907 responses
🔹 54% say GnRH agonists worsened fatigue
🔹 Most treatments showed little benefit
📄 Read the research: raf.bioscientifica.com/view/journal... @endo1000.bsky.social @edinuni-irr.bsky.social
What a night!
With £22,000 raised at our charity dinner, we can now recruit another 22 participants to our life-changing research. A HUGE thank you to everyone who bought tables, donated prizes, and bid at the auction, particularly @lloydsbankinggroup
Donate at eendo1000.com/...
Text: “It isn’t just about data, its about giving people their lives back. It’s about the millions of women and girls who wake up everyday in pain, misdiagnosed, misunderstood, and alone.” Image: Kayleigh stood on stage at a lectern, next to a large tv screen with her name on it
At our fundraising dinner on Tuesday, Kayleigh shared her experience living with endometriosis, and how ENDO1000 can change lives. Her voice and story are an inspiration to our work.
Learn more about Endo1000 and donate to support our cause at www.endo1000.com/...
