Endometriosis UK
@EndometriosisUK
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Endometriosis UK provides vital support services, reliable information and a community for those affected by endometriosis.
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Last Seen Profiles
#Endometriosis
is a main BBC story today.
Finally society is starting to wake up & understand the impact this condition has. 1 in 10 women are affected - and the research today shows just what a huge impact it can have.
#bbc
#news
#endometriosis
67
1K
2K
The APPG report on endometriosis is now LIVE.
The inquiry has revealed a series of shocking statistics on the devastating impact endometriosis can have – and a series of recommendations on how care must be improved.
#endometriosis
16
322
606
Endometriosis is officially trending on Twitter!
Thank you to all of you posting and sharing your stories with us so far today.
#endometriosis
2
89
481
This is the beginning of incredible change. No longer will young people suffer in silence because they believe their pain is normal or because they're too ashamed to speak up. This is what's possible when we raise our voices. 🎗 Pls RT
#menstrualwellbeing2020
9
167
359
People can’t get diagnosed if they don’t know what they are experiencing is not normal. We want menstrual well-being taught in schools so it’s done safely and managed well.
@endoAPPG
8
111
366
We did it! Thanks to your support, Education Minister
@DamianHinds
just announced that menstrual wellbeing will be taught in schools from 2020. This is a huge win and will help change the way we all talk about menstrual conditions
#endometriosis
#periods
#fibroids
#pcos
#pmdd
10
127
363
All of us at Endometriosis UK are devastated by news of Sir David Amess (
@amessd_southend
) MP's death. Sir David worked tirelessly to raise awareness & improve services for endometriosis, inc as chair of Endometriosis APPG. Our thoughts are with his family, friends & colleagues
5
133
352
Are you watching
@BBCNews
at 10? New BBC research just announced unveils the shocking reality of what living with
#endometriosis
is like. This has to be a wake up call to provide better care for the 1.5 million with the disease.
14
143
316
Thank you
@BBCNews
at 10 for covering so many people’s stories as part of the
@endoAPPG
report launch, coming out tomorrow.
#endometriosis
8
92
297
“This shocking new research is a stark reminder that both society and the
#NHS
need to wake up and accept that endometriosis is a chronic condition that cannot be brushed under the carpet.” Read our full statement on
@BBCNews
#endometriosis
research here:
3
117
270
Make a difference to girls and women - sign this petition to get menstrual wellbeing taught in schools. Let's stop treating periods like a dirty secret.
#Endometriosis
#fibroids
#PCOS
#PeriodProblems
#periods
#periodpoverty
16
186
260
Today we launch our new logo, to better represent the 1.5million with
#endometriosis
in the UK and our goal to end the impact endometriosis can have; end the taboos, end the ignorance, end the isolation and end the pain it can cause. Big thanks to all who helped us develop it.
4
63
260
Today MPs launch an inquiry to investigate the challenges faced by 1.5 million women with
#endometriosis
. We urge everyone with endometriosis to take part and help ensure much needed improvements in diagnosis, treatment and support:
12
224
242
It’s the first day of
#EndometriosisAwarenessMonth
. New statistics released today show that 62% of women (aged 16-54) would put off going to a Doctor with symptoms of
#endometriosis
.
1.5 million live with
#endometriosis
. Have you heard of it? (1/2)
3
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246
"The hardest thing about endometriosis is not being able to plan ahead - because you don't know what your pain will be on that day"
#endometriosisatwork
#endometriosis
4
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Good morning
@instagram
- we are being told by several of our supporters that they are being blocked from posting
#endometriosis
content online. Please don’t silence our community, when our voices are already not heard enough.
We’d be grateful if you could look into this.
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231
📢 We have received the positive news today that the National Institute for Health and Care Excellence (NICE) have agreed to review parts of their guideline on
#endometriosis
.
#thread
👇
1
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227
Thank you for sharing your
#endometriosis
stories with both us and the BBC all day.
The news is still going & we hope today has been the start of a new conversation around this often debilitating disease.
Don’t forget if you need support, our support services are here for you.
3
42
226
We’re delighted that the APPG on
#Endometriosis
have responded to the
@BBCNews
survey results with an announcement to launch a Government inquiry later in the year to ensure women with endometriosis are given the right support at the right time.
13
78
222
Thanks to the 20 MPs who attended todays UK parliament debate on
#endometriosis
&
#PCOS
#research
. Pleased that MPs recognised lack of research into both conditions & need for improvements; now time for concrete action!
#PCOSandEndoDebate
#EndoPCOSDebate
8
49
224
Women with endometriosis 'finally being believed' as APPG on
#endometriosis
today hears from women with the disease:
Via
@BBCNews
6
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220
Hands up if you’ve been told this before too? Far too many people with endometriosis are told to “just get on with it”, or that it’s “just a bad period”. It’s time that people with endometriosis are heard and taken seriously, are you with us?
19
51
220
Commenting on
#mentalhealthday
: “The
#NHS
needs to recognise the impact chronic pain conditions can have on mental as well as physical health, and ensure patients are afforded support for both their physical and mental health within an integrated pathway” - Endometriosis UK
2
96
206
Thank you
@thismorning
@DrLarisaTV
for raising awareness of
#endometriosis
and symptoms. With an average of 8 yrs to get a diagnosis, too many suffer for too long without treatment, support, or even being believed.
6
55
205
This
#EndometriosisAwarenessMonth
- educate yourself. The chances are you know someone with endometriosis, it affects 1.5 million of us.
We must all educate ourselves so that nobody with
#endometriosis
suffers in silence.
Find out more:
1
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199
Throughout December, we're celebrating the people who helped shape the way society talks about
#endometriosis
in 2019.
@Emmabarnett
is a BBC journalist, broadcaster & best selling author. She also has
#endometriosis
.
This year, Emma used her voice for change. Thank you Emma!
3
39
197
We are delighted to be working with
@MerseyPolice
who have become the UKs first police force to become an
#Endometriosis
Friendly Employer, ensuring police officers with
#endometriosis
are offered the support they need to thrive at work. Great work by
@MerseyPolice
.
@LivEchonews
3
22
189
Thank you
@SkyNews
for having our CEO Emma Cox on air this morning, raising awareness of endometriosis and the common symptoms.
#EndometriosisActionMonth
Over 1.5 million women in the UK are affected by endometriosis.
CEO of Endometriosis UK
@msemmacox
explains what the condition is and how it affects women⬇️
More:
📺 Sky 501, Virgin 602, Freeview 233 and YouTube
12
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5
44
183
Leah Williamson, captain of the Lionesses, has shared her honest experience of living with
#endometriosis
after being diagnosed last year.
Thank you Leah for being so honest, brave and generous in sharing your story.
@UKWomensHealth
2
42
183
A huge thank you to
@alexa_chung
for speaking about her
#endometriosis
this
#EndometriosisAwarenessMonth
, who says she is "Sending love to those in pain and thanks to doctors trying to help."
2
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182
The phrase ‘benign gynaecology’ is frequently used in the NHS as medical shorthand to refer to gynaecological conditions that are not cancers. New polling shows that benign is understood as meaning ‘not serious’ or ‘harmless’, which does not represent the patient experience.
7
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178
"When I was growing up I just thought being on your hands and knees crying on the floor every month was normal".
A huge thank you to journalist Sam Poling for sharing her experience of
#endometriosis
via
@BBCScotland
5
61
177
Make sure you’re tuning into
@BBCBreakfast
with
@Emmabarnett
and
@horne_research
right now.
“We don’t know what causes
#endometriosis
and we don’t know how to cure it”. Today is a reminder that there is so much more to do. Investment in research is key.
4
53
169
We are so proud to launch our Endometriosis Friendly Employer Scheme today - providing guidance to employers on how to support people with
#endometriosis
at work. Endometriosis affects 1 in 10 women and is an issue employers can’t afford to ignore:
4
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174
We've received hundreds of messages on the back of this news today. Here are just a few about why we must continue our work to raise awareness:
"Perhaps I wouldn't have spent 15 years putting off going to the GP if my teacher had helped me realise period pain wasn't normal"
9
21
172
Can you believe 54% still don't know what
#endometriosis
is?
This
#EndometriosisAwarenessMonth
, which starts today, important conversations must be had so we can live in a world where menstrual health issues are recognised and understood.
3
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159
We now look forward to working with the Department for Education to ensure menstrual wellbeing forms part of the RSE code in Wales
2
13
161
Our statement will be available in full tomorrow.
A huge thank you to the 13,500 of you who came forward to tell your story as part of this
@BBCNews
research. We hope through this research that your voices will be heard & that the government will take bold action.
1
36
155
New
#research
finds that common treatment for
#endometriosis
may not be as effective as thought: This highlights the urgent need for more
#research
(like this study) into effectiveness of different treatments to support all those living with the condition
11
86
158
End my pain being ignored.
End the long wait for diagnosis.
End the taboo around my disease.
Keep an eye out for our six models, all of whom live with
#endometriosis
, on four digital billboards in sites across the country on Wednesday and Thursday.
4
42
156
It’s officially Endometriosis Awareness Week! We’re off to Parliament today for the
@APPG_WH
AGM to discuss the importance of education in understanding endometriosis. We’re excited to share with MPs how they can support Awareness Week this year.
7
74
151
🖐️Hands up if you’ve been told your symptoms were “just bad luck” or “just a bad period”?
We hear comments like this too often and that’s why we’re raising your voices to drive change.
What endometriosis myths have you heard?
Share your story at:
18
26
152
Wishing
@amyschumer
all the best after undergoing endometriosis and adenomyosis surgery. Thank you so much for sharing your experience and for raising awareness.
#endometriosis
#myendostory
1
16
146
Any fit note reform must take account of menstrual health conditions like endometriosis.
Long-term cyclical conditions should be covered so that those living with endometriosis can thrive at work.
Prime Minister Rishi Sunak will call for an end to the UK's "sick note culture" and move responsibility for assessing fitness to work away from GPs to "specialist work and health professionals" in England.
Work and Pensions Secretary Mel Stride spoke to
#BBCBreakfast
620
99
394
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31
146
"Dismissed, ignored and belittled" The long road to endometriosis diagnosis in the UK.
The results of our recent diagnosis survey show that diagnosis times in the UK have significantly worsened over the last 3 years.
Read the full report at:
2
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148
‘All too often women are told their pain is imagined and something they are going to just have to put up with’
@NadineDorries
@endoAPPG
1
57
143
Tomorrow is the start of Endometriosis Awareness Week! If you're raring to be heard, stay tuned for how to get involved... We'll be sharing more tomorrow morning!
#menstrualwellbeing2020
#endometriosisawarenessweek
2
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140
It takes an average of 7.5 years to get a diagnosis of
#endometriosis
in the UK - it shouldn't. Lets bring that down by raising awareness.
8
210
142
End the silence.
End the pain.
It's time for Action.
We're launching our list of actions to be taken during
#EndometriosisActionMonth
- whoever you are, if you want support those with the disease, find out what you can do here:
2
92
139
MPs are due to debate
#endometriosis
in the
#workplace
at 2:30. A debate which we hope will go some way in affording people with the condition the support they need to thrive in the workplace. Follow us and
@HouseofCommons
for live updates. We'll be tweeting live from 2:30pm
4
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137
Endometriosis is a chronic pain condition and should be treated like all other chronic pain conditions - with pain management options and support for coping.
#researchendonow
1
65
136
Today’s the day! Today we are virtually marching as part of the
@WWEndoMarch
in solidarity with the 1.5 million in the UK living with
#endometriosis
. An incurable condition that takes on average 8 years to diagnose. So much work to do.
@EndomarchLondon
.
0
61
140
A huge thank you to
@EmmaBunton
for speaking out about her
#endometriosis
and
#fertility
journey: …
For more information on fertility and endometriosis, visit our website:
3
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137
What. A. Day. 🤩
Alongside our one charity place runner, we were so thankful that several runners with ballot places also chose to support Endometriosis UK this year 👇
4
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139
New research from Endometriosis UK in March found that 54% of people have not heard of
#endometriosis
, despite it affecting 1.5 million in the UK.
Together we can change that.
1
98
135
"One person who had a hysterectomy was told when leaving the women's health unit of the hospital by a healthcare worker that 'we won't be seeing you again then" - another example of how those with
#endometriosis
are all too often fighting stigma and unhelpful comments.
12
29
137
"The pain should not be so intense that you cannot still get up, go to school, college or work, and carry on with your normal life. If it is, then you should speak to somebody."
Great to see
#endometriosis
awareness in
@CosmopolitanUK
2
50
137
75% of women and those assigned female at birth said that they would not go to doctor if they were experiencing painful periods that interfered with day to day life, according to a recent survey conducted by Endometriosis UK.
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We were shocked by the statistics in the BBC survey and remain committed to raising awareness to ensure people with endometriosis get the support they deserve.
It is thanks to our supporters that we can drive such positive change. Thank you.
#endometriosis
3
23
135
The
@UKParliament
will debate the need for more research funding for endometriosis and PCOS, on 18th October. Watch out for more information including how to lobby your MP to attend.
@veritypcos
#endometriosis
#endometriosisawareness
#PCOS
#PCOSAwareness
#research
#health
6
52
133
Can you believe that average diagnosis time for
#endometriosis
hasn't changed in a decade? This has to change.
Lobby your MP today to turn this around
8
57
130
Love Islander
@mollymaehague
has announced she is due to have surgery for suspected endometriosis. Speaking on her YouTube channel she said she has suffered from "excruciating periods" for years. Thanks Molly for raising awareness of this disease which affects 1.5m in the UK
0
18
130
"I wish we were taught about endometriosis, pcos, cysts and any other disorders a woman can have. ️That for some women you can be in so much pain that you physically can’t get out of bed and that those women aren’t weak."
#whatiwishilearned
#endometriosis
#menstruation
#periods
3
55
124
"
#whatiwishilearned
at school is that ENDOMETRIOSIS EXISTS! It took me 13 years to find my diagnosis... Being fobbed off for just having a bad period when you're bleeding through layers of period care and collapsing because of the pain is most certainly not normal.”
#menstruation
2
44
126
Following a campaign by Endometriosis UK, NICE (National Institute of Health and Care Excellence) agreed to review the guideline on Endometriosis Diagnosis and Management.
We’re pleased to announce our CEO, Emma Cox, has been appointed to the NICE Committee undertaking the review
7
13
127
Thank you to the Chair of the
@endoAPPG
@amessd_southend
for raising the impact of
#covid19
on
#endometriosis
patients in the House of Commons today. We look forward to working with the APPG to ensure those with
#endometriosis
are not left behind
Today I asked the Leader of the House about support for people suffering with endometriosis, in particular for those who have had treatments and surgeries delayed or cancelled due to the pandemic.
@endoAPPG
@EndometriosisUK
12
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3
30
126
"Doctors treated my endometriosis like a character flaw rather than a medical condition"
This article highlights the urgent need for improved understanding and care for those with
#endometriosis
.
Thank you
@theipaper
for highlighting this important issue.
1
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124
Update: Following conversations with
@Facebook
and
@instagram
, the issues with tagging
#endometriosis
and Endometriosis UK on social media should now be resolved.
A huge thank you to everyone who raised this.
3
18
122
Happy
#InternationalWomensDay
! We have the privilege of working with incredible people who support women with
#endometriosis
and are working towards a world where endometriosis is recognised and understood. There’s a long way to go, but together we can make it happen 💪🏼
0
46
123
It's Endometriosis Awareness Week.
All week we will be sharing the stories of what women wish they had been told about
#endometriosis
#EndometriosisAwarenessWeek
3
87
121
Today it’s
#MenstrualHygieneDay
and we’d like to see all children being taught about
#menstrualwellbeing
in schools. Let’s stop treating
#periods
like a dirty secret and give young women the confidence & knowledge to seek help when something isn’t right. Are you with us? 🙌🏼
2
64
121
“I didn’t think being in pain was something I should challenge” -
@Emmabarnett
talking
#periods
and
#endometriosis
on
@thismorning
with
@hollywills
and
@Schofe
today. Thank you for all you do to break down the taboos in talking menstrual health 💪🏼👌👏🏻
2
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117
The family of the late Sir David Amess MP has asked the public to donate to a group of five charities, including Endometriosis UK, ahead of his funeral next week. We are very grateful to be included and will never forget Sir David's support for this cause.
0
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120
Have you seen the headlines today on
#bloodtests
being able to detect
#endometriosis
? Although we welcome new research, we’re incredibly concerned that this small research study will give false hope to
#women
. Read the full story here:
6
74
122
Thank you
@AlecShelbrooke
for asking an important question in the House today on
#endometriosis
. We look forward to hearing from
@Jacob_Rees_Mogg
with regards to a debate.
6
52
118
Thank you to the Australian Government for announcing $10m for
#Endometriosis
research and awareness; two key drivers in reducing diagnosis times. Well done to
@endoactive
for making this happen. Read more about the news here:
#endometriosisresearch
0
46
115
Chronic fatigue an under-recognised symptom of endometriosis, study finds
5
73
116
The new APPG inquiry on
#endometriosis
represents a huge opportunity to push for real change for people affected by endometriosis and shape the way care is delivered in the future. To respond to the call for evidence, visit
13
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120
(2/2)
#InternationalWomensDay
and we
#choosetochallenge
so that every person with
#endometriosis
has access to the right care at the right time.
There is so much more to do, and we're proud to be at the heart of driving change for anyone affected by
#endometriosis
.
2
37
116
Listen out on
@BBCNews
- regional and national - throughout tomorrow as we talk about new BBC research on
#endometriosis
.
We’re looking forward to a day and evening of interviews to raise awareness and call on the Government to take action.
4
68
118
Look out on
@thismorning
for an interview with the incredible Bhavni about her experience of living with
#endometriosis
&
@DrLarisaTV
7
18
115
Pain research has found that there is a neuropathic component to endometriosis-associated pain and that it has a real affect on wellbeing, from depression, anxiety, and fatigue to name a few.
#researchendonow
2
63
111
This amazing group of dedicated endometriosis Doctors are due to arrive in Edinburgh today after cycling 720km from London, in support of Endometriosis UK! If you'd like to support them you can do it here:
0
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116
The 'out-of-body' pain of living with endometriosis.
Thank you
@bbcthree
for making another great video that demonstrates how much pain endometriosis can cause.
4
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110
Tomorrow 21st May at 4:30pm, MPs will attend a Westminster Hall debate on endometriosis education in schools.
Take action today and ask your local representative to join this important conversation 👇
Find your local MP at:
#endometriosis
4
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114
📅 Tomorrow (Wednesday 9th of February) there will be a debate in Parliament on supporting those with
#endometriosis
in the workplace.
🗣️ The Westminster Hall debate, which will begin at 14.30, was secured by
@AlecShelbrooke
, who is a member of the APPG on Endometriosis.
(1/2)
6
42
111
"Far too many women are told to just get pregnant to cure
#endometriosis
", which was highlighted by
@Fionasstalker
earlier this month via
@BBCScotlandNews
. There is NO cure for endometriosis. Saying this is not only incorrect, but incredibly insensitive and unhelpful.
9
32
114
It has been great to see
@new_magazine
doing a spread to raise awareness on the issues that surround
#Endometriosis
1
48
111
Let’s talk adenomyosis.
You may have seen adenomyosis in the press recently thanks to BBC Presenter Naga Munchetty sharing her experience of the impact the condition has had on her life and career.
But what is adenomyosis? 👇
9
27
111
"I wish I had listened to my body earlier, and said something instead of doing nothing. We all need to speak up".
Thank you
@Emmabarnett
, as always, for your honesty in this piece via
@BritishVogue
on your
#endometriosis
journey.
Read it here:
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Launching tomorrow! We’d like to say a huge thank you to everyone who has contributed to the APPG inquiry. Keep an eye on our social media channels tomorrow to see the findings from the report and how you can get involved.
#endometriosisappg
1/2
1
44
112
Your voice will be heard – on Monday, after 100,000 signatures on a petition and more than 6,000 letters sent to MPs, funding for
#research
into
#endometriosis
and
#PCOS
will be debated in parliament.
Thanks to everyone who made this happen
@veritypcos
0
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News: "Cancer drug offers hope of new endometriosis treatment" via
@ScottishSun
. Find out more:
1
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Happy New Year! We want 2018 to be a great year for
#endometriosis
. January we’re launching a campaign to get Menstrual Wellbeing taught in schools; we’re working with
@rcgp
to educate GP; & March sees
#EndometriosisAwareness
week and
@WWEndoMarch
. Lots to do ...
6
50
108
Thank you to everyone who joined us today to turn social media yellow for the
@WWEndoMarch
! There’s certainly a long way to go to ensure everyone has access to the right care at the right time, and our community are fighting hard to make it happen 🎗💛
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