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ENDO1000 @endo1000.bsky.social · 10d

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 | The UK-wide Endometriosis Research Project

endo1000.com

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ENDO1000 @endo1000.bsky.social · 11d

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 · 25d

#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."

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ENDO1000 @endo1000.bsky.social · Sep 10

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

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ENDO1000 @endo1000.bsky.social · Sep 8

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! ❤️

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ENDO1000 @endo1000.bsky.social · Aug 14

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? 👇

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ENDO1000 @endo1000.bsky.social · Aug 1

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.

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ENDO1000 @endo1000.bsky.social · Jul 23

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!

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ENDO1000 @endo1000.bsky.social · Jul 20

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

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ENDO1000 @endo1000.bsky.social · Jul 16

Have you got your tickets yet? 🎟️

ENDO1000 @endo1000.bsky.social · Jun 30

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'

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ENDO1000 @endo1000.bsky.social · Jul 9

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

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Reposted by ENDO1000

brigidharty.bsky.social @brigidharty.bsky.social · Jul 7

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

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.

www.eventbrite.co.uk

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Reposted by ENDO1000

Institute for Regeneration and Repair @edinuni-irr.bsky.social · Jul 8

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...

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ENDO1000 @endo1000.bsky.social · Jul 7

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. 🤝

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ENDO1000 @endo1000.bsky.social · Jun 30

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.🩸

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ENDO1000 @endo1000.bsky.social · Jun 26

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 ❤️

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ENDO1000 @endo1000.bsky.social · Jun 20

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.

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ENDO1000 @endo1000.bsky.social · Jun 16

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 · Jun 10

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 · Jun 6

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)

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ENDO1000 @endo1000.bsky.social · Jun 2

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."

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ENDO1000 @endo1000.bsky.social · May 28

“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 👇

The Conversation UK @uk.theconversation.com · May 23

Left unsupported, endometriosis can bring misery for the women who suffer it – and it can damage their careers and workplace wellbeing.

Working women are too often left to deal with endometriosis alone. But big changes could be coming

Left unsupported, endometriosis can bring misery for the women who suffer it – and it can damage their careers and workplace wellbeing.

tcnv.link

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ENDO1000 @endo1000.bsky.social · May 26

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 · May 22

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 · May 20

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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