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ENDO1000 @endo1000.bsky.social · 01/10/2025

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🩸

endo1000.com

Endo1000 | The UK-wide Endometriosis Research Project

ENDO1000 @endo1000.bsky.social · 30/09/2025

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.

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."

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."

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ENDO1000 @endo1000.bsky.social · 16/09/2025

#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.

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."

ENDO1000 @endo1000.bsky.social · 10/09/2025

Retrograde menstruation - what's it got to do with #endometriosis? ⬇️

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

ENDO1000 @endo1000.bsky.social · 08/09/2025

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! ❤️

ENDO1000 @endo1000.bsky.social · 14/08/2025

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? 👇

ENDO1000 @endo1000.bsky.social · 01/08/2025

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 ✍️

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.

ENDO1000 @endo1000.bsky.social · 23/07/2025

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!

ENDO1000 @endo1000.bsky.social · 20/07/2025

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 🩸

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 @endo1000.bsky.social · 16/07/2025

Have you got your tickets yet? 🎟️

ENDO1000 @endo1000.bsky.social · 09/07/2025

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?

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

Institute for Regeneration and Repair @edinuni-irr.bsky.social · 08/07/2025

Reposted by ENDO1000

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...

eventbrite.co.uk

Perfect Day LIVE with Jessica Knappett and ENDO1000 featuring special guest

Join star of Taskmaster and Drifters, Jessica Knappett, for a LIVE episode of Perfect Day podcast featuring a special guest.

ENDO1000 @endo1000.bsky.social · 07/07/2025

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. 🤝

ENDO1000 @endo1000.bsky.social · 30/06/2025

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.🩸

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'

ENDO1000 @endo1000.bsky.social · 26/06/2025

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 ❤️

ENDO1000 @endo1000.bsky.social · 20/06/2025

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.

ENDO1000 @endo1000.bsky.social · 16/06/2025

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!)

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ENDO1000 @endo1000.bsky.social · 10/06/2025

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!

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

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ENDO1000 @endo1000.bsky.social · 06/06/2025

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)

ENDO1000 @endo1000.bsky.social · 02/06/2025

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!

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."

ENDO1000 @endo1000.bsky.social · 28/05/2025

“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 👇

ENDO1000 @endo1000.bsky.social · 26/05/2025

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!

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.

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Reposted by ENDO1000

Andrew Horne @horne-research.bsky.social · 23/05/2025

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

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ENDO1000 @endo1000.bsky.social · 20/05/2025

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/...

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.

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ENDO1000 @endo1000.bsky.social · 19/05/2025

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!

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Reposted by ENDO1000

Andrew Horne @horne-research.bsky.social · 16/05/2025

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

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ENDO1000 @endo1000.bsky.social · 08/05/2025

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/...

ENDO1000 @endo1000.bsky.social · 08/05/2025

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/...

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

ENDO1000 @endo1000.bsky.social · 06/05/2025

We’re at The Mound tonight for our charity auction, fingers crossed we raise a lot of money! 🤞

A photo of a table setting, there are gold knives and forks, an orange leaflet that says ‘Endo1000’, an Endo1000 branded pen and sticker

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ENDO1000 @endo1000.bsky.social · 28/04/2025

Ambassador Lynsey has successfully raised over £1000 for ENDO1000! To find out how you can raise money for us and help us include as many participants as possible, head to endo1000.com Thank you Lynsey!

A screenshot of Lynsey Milligan's JustGiving page showing that she has raised £1,007 for the ENDO1000 project

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Reposted by ENDO1000

Institute for Regeneration and Repair @edinuni-irr.bsky.social · 28/04/2025

Can a change in diet reduce the pain symptoms of endometriosis? ☕🧀 CRH researchers Andrew Horne, Phillipa Saunders and Francesca Hearn-Yeates share the results from their study into endometriosis pain management with @uk.theconversation.com Read the article: theconversation.com/endometriosi...

theconversation.com

Endometriosis: our research shows changing your diet may reduce pain symptoms

Around 67% of participants noted that changing their diet had a positive effect on pain.

ENDO1000 @endo1000.bsky.social · 16/04/2025

Meet the team! Say hello to Thanasis, lead for digital health 👋 Thanasis is working on the data collection for ENDO1000, including our custom app and smartwatches. Head to our website for more info about the team and sign up to our mailing list! #womenshealth #talkendo#endometriosis

ENDO1000 @endo1000.bsky.social · 09/04/2025

Do you have endometriosis or suspected endometriosis? Take part in our research that explores the prevalence of brain fog in people with endometriosis 🧠 Complete the 15-20 minute survey at the following link: crh-redcap.igmm.ed.ac.uk/surveys/?s=E...

ENDO1000 @endo1000.bsky.social · 07/04/2025

Research from the EXPPECT team at @edinuni-irr.bsky.social: A survey of over 2500 individuals has indicated multiple dietary modifications, including reducing alcohol and caffeine, may have a positive effect on pain. As featured in @theguardian.com on Saturday www.theguardian.com/society/2025...

theguardian.com

Major endometriosis study reveals impact of gluten, coffee, dairy and alcohol

Edinburgh University report authors say dietary changes could benefit women living with the disease

p-saunder.bsky.social @p-saunder.bsky.social · 01/04/2025

Reposted by ENDO1000

This survey study examines which dietary modifications or supplements were perceived as beneficial for pain management by individuals with endometriosis. #rndometriosis. Delighted to share our latest findings. @endo1000.bsky.social @horne-research.bsky.social

ENDO1000 @endo1000.bsky.social · 31/03/2025

To wrap up #EndometriosisActionMonth, we wanted to share our visit to ScotParl last week. Ann & Priscilla represented ENDO1000 as honored guests of Endometriosis UK. Speakers were optimistic that Scotland could siginficantly reduce diagnosis time by 2030 - down to under a year 🤞

A group of women stand in Scottish Parliament, in front of a banner and holding a board in yellow and red with the words "I'm supporting ENDOMETRIOSIS ACTION MONTH, Endometriosis UK". They are smiling at the camera.

A group of approximately 25 people are standing and chatting in a Scottish Parliament room. The room has a large table with lots of microphones on it.

Monica Lennon MSP stands at a lecturn giving a talk. She is standing in front of a large tv screen with the words "Dismissed, ignored and belittled" on it.

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Reposted by ENDO1000

Institute for Regeneration and Repair @edinuni-irr.bsky.social · 24/03/2025

Next up in our #EndometriosisAwarenessMonth series, Professor Andrew Horne talks about his team's current endometriosis research. Interested in finding out more about ENDO1000 and ESpriT2? Visit www.exppectedinburgh.co.uk/ #Endometriosis #WomensHealth

ENDO1000 @endo1000.bsky.social · 20/03/2025

Watch the more in-depth STV Scotland Tonight piece on the tragic story of Nicola and the reality of endometriosis care in Scotland and across the UK, featuring some of the science from ENDO1000's AndrewHorne (starting at 09:07) player.stv.tv/episode/4poz/scotland-tonight

ENDO1000 @endo1000.bsky.social · 18/03/2025

ENDO1000 Clinical lead Lucy Whitaker talking about her other research into non-hormonal treatments!

ENDO1000 @endo1000.bsky.social · 13/03/2025

While this new treatment option in England is positive news for giving people options, it’s import to note it’s not a ‘magic bullet’. It’s vital we continue to look for non-hormonal treatments like with the Edinburgh EXPPECT team and whole-body and lifestyle studies like ours! #1in10 #endometriosis

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Institute for Regeneration and Repair @edinuni-irr.bsky.social · 11/03/2025

Continuing on with our #EndometriosisAwarenessMonth campaign, we asked three of our researchers to explain their research in 15 words or less. Find out more about their research on the EXPPECT website: www.exppectedinburgh.co.uk/

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ENDO1000 @endo1000.bsky.social · 10/03/2025

ENDO1000 co-director @horne-research.bsky.social was in Spain last week, presenting at a conference about endometriosis diagnosis. Also speaking was patient advocate Kristy Penrose. It's great to see patient perspectives included at conferences like this! #TalkEndo #endometriosisawarenessmonth

Professor Andrew Horne stands at a lectern at a conference and is mid speaking. He is stood in front of a screen showing a diagram of diagnostic delays for endometriosis.

Patient advocate Kristy Penrose stands at a lectern at a conference. She is stood in front of a screen showing an image of a post-it note that says "PAIN DIARY!"

Professor Andrew Horne stands at a lectern at a conference and is mid speaking. He is stood in front of a screen showing a diagram of latest research on possible treatment for endometriosis

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ENDO1000 @endo1000.bsky.social · 03/03/2025

Last week co-director Andrew Horne presented the ENDO1000 project at the international Endometriosis 2025: Your Mother Should Know, Your Doctor Should Know Better conference in New York. Great to see so many international colleagues committed to expanding understanding and tackling this condition!

Andrew Horne stands behind a speakers podium holding a slide advancer and gesturing with his hands towards the presentation screen behind him. On the screen is an overview of the ENDO1000 project. There is another man sat on stage to the left of Andrew.

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ENDO1000 @endo1000.bsky.social · 28/02/2025

It's Endometriosis Action Month coming up in just a couple of days. The theme for 2025 is #EndometriosisExplained Here are some ways you can be a part of it this year, from our friends at EndometriosisUK buff.ly/3QBv5tN #1in10 #ENDO1000

ENDO1000 @endo1000.bsky.social · 26/02/2025

We've got some runners! A team of clinicians and researchers from the NHS Lothian and Edinburgh University's EXPPECT Team and research department will be running in the EDINBURGH MARATHON RELAY to raise money for ENDO1000! Support if you can! buff.ly/4h4dyVI

buff.ly

ENDO1000 - Edinburgh Marathon Relay

Help Rosa Mackenzie raise money to support The University of Edinburgh

ENDO1000 @endo1000.bsky.social · 20/02/2025

The ENDO1000 lab team welcomed our colleagues in Development and Alumni, (who help us out with fundraising and donations) to the lab yesterday! It's great to be able to share what each team is doing and stay connected for our cause! Thanks for coming by! #1in10 #TalkEndo #Endometriosis

A group of 7 women stand in a lab, all wearing white lab coats and looking happy.

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ENDO1000 @endo1000.bsky.social · 19/02/2025

1 in 10 women have endometriosis. Even this might be an underestimate due to the delay in diagnosis. It's no surprise that more women are speaking out about their experience with it. It's vital that we continue to #TalkEndo buff.ly/3CXAAj2 #1in10 #Traitors #Endometriosis

buff.ly

The Traitors' Elen has opened up about her stage 4 endometriosis

Like too many women, she had to fight for years to be heard