Endometriosis in the workplace
How women from across the country contributed to a Parliamentary debate
What is endometriosis?
According to leading charity Endometriosis UK:
"Endometriosis is a chronic and debilitating condition that can cause painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems.
"Around 1.5 million women in the UK are currently living with the condition. It can affect all girls, women, and those assigned female at birth, from puberty to menopause, regardless of race or ethnicity."
“I had a 7 year wait for diagnosis. From my referral to the hospital, I had a year and a half wait for surgery... I was in constant pain, slept for 3 or 4 hours a day and was unable to care for my son properly, I considered putting him into care. If it wasn't for him, I would have given up on everything.”
Kathryn, Cornwall
Kathryn was writing in response to a social media post from the House of Commons calling for public contributions to a Parliamentary debate.
The MP leading the debate wanted to hear from those living with endometriosis, specifically:
- about their experiences of diagnosis
- what their workplaces had done to support them.
Have you been diagnosed with #endometriosis?
— UK House of Commons (@HouseofCommons) October 23, 2019
How supportive is your workplace?
On 29 October, @AlecShelbrooke will lead a debate on endometriosis and he wants to hear about your experiences.
Click the image to share your story.
Deadline: 12pm, 28 October.
The response
Over 2.6 thousand women responded across Twitter, Facebook and a private survey. There were many common themes which demonstrated just how damaging the condition can be:
- Diagnosis often takes years, with doctors frequently dismissing symptoms and advising taking painkillers
"This disease was dismissed out of many doctors' offices and I felt like it was in my head because I was sent away with ibuprofen and told to get more exercise. It took 7 years to diagnose by which time I had lost the ability to move properly. On my flexible working interviews, I was asked if he should write 'women's problems or period pain'."
- Endometriosis is not widely known about in workplaces, so support is lacking
"Half of my workforce don't know what it is and the other half think it's just stomach pains. Nobody understands or even tries to understand the condition. I work for the biggest postal service in the UK and although they pay full sick pay the pressure they put on you when you're sick is unreal."
- Many have lost jobs due to the policies of workplaces to the condition
"I have been fired from all my jobs, my last workplace bullied me and mocked my illness, nothing was done via HR and I was made to leave instead. I have never had support from any workplace."
- The condition has hugely negative effects on their mental health, relationships and wider circumstances
"I have lost jobs, friends and even boyfriends because they could not cope or understand. I have been unable to get any financial help when out off work due to pain and still have to fight to make healthcare professionals understand, which has led to depression which I have managed to overcome, but I’m still having to fight everyday"
The contributions were summarised into a brief for Alec Shelbrooke - the MP leading the debate.
It featured the main themes to emerge, and some of the most hard-hitting quotes from those who had contributed.
Grateful to @HouseofCommons digital engagement staff for promoting my debate and collating an overwhelming number of responses from women living with and suffering from #endometriosis across the U.K. pic.twitter.com/QPGYWWQDwB
— Alec Shelbrooke MP (@AlecShelbrooke) October 29, 2019
The debate
29 October 2019
Westminster Hall
Alec read out four of the stories, and covered all of the key themes which emerged from the contributions.
Several other MPs from across the political parties spoke during the debate. They told their own stories of suffering from similar conditions, and shared the experiences of their friends, family and constituents who had endometriosis.
Now is the time to take women's health seriously & work together to help with #endometriosis & #endometriosisatwork @EndometriosisUK, here is my latest statement in #Westminster earlier today...(full statement https://t.co/kMUABm37hZ) pic.twitter.com/fZ13WxkdM8
— Emma Hardy MP (@EmmaHardyMP) October 29, 2019
Very glad that MPs are discussing endometriosis and other issues to do with periods because it is so important to end the taboo. @LouHaigh was particularly brave speaking about her own experiences. https://t.co/6BeplgV5Ua
— Nicola Bartlett (@NicolaRBartlett) October 29, 2019
The debate gained national attention through celebrities like Emma Barnett and leading charity Endometriosis UK.
Thousands watched the Facebook livestream and some members of the public attended in person:
A lot of woman trusted me with their period stories for the book. And today their issues were raised in the House of Commons- aka the legislative chamber #change #periodpride #endometriosis https://t.co/XqkLRI9amM
— Emma Barnett (@Emmabarnett) October 29, 2019
Am crying my way through listening to it. It is SO unbelievable to hear people taking it seriously at long long last ❤️
— Rebecca J Burman (@Mrsjustpassing) October 29, 2019
Thank you @endometriosisuk for your part in this x
Couldn’t have asked to go to Parliament today with a better group of people. We really enjoyed the debate and couldn’t be happier. Thank you to everyone who has helped us. #endometriosis @AlecShelbrooke @DrLarisaTV @alexa_chung @amessd_southend @JackieDP pic.twitter.com/TEDIODrnjO
— Keisha Meek (@keisha_meek) October 29, 2019
Here are some highlights of the debate, and statements from some of the MPs who spoke:
The Government's response
Debates in Westminster Hall are always attended by a government minister. He or she must set out the government's position on the issue, and respond to the points raised.
In his speech, Minister for Disabled People Justin Tomlinson MP stated that:
- The Office for Disability Issues has recently moved to the Cabinet Office, from where it can ensure a joined-up approach across other Government departments regarding disability issues.
- The Government will engage fully with the upcoming review by the All-Party Parliamentary Group on Endometriosis.
- NHS England has developed a service specification for severe endometriosis under the specialised commissioning area of complex gynaecology.
- The Equality Act 2010 protects workers from unfair dismissal and discrimination, and more must be done to raise awareness of hidden disabilities.
- The Government are committed to promoting flexible working arrangements with employers, reducing barriers to employment for those with with health conditions.
Since then, the Government has updated MPs by responding to several written questions on endometriosis. View their answers and other relevant material for updates.
Kathryn's story
We began with Kathryn, who spoke of how endometriosis had affected her life.
Alec read her story out in full during the debate:
On being quoted in Parliament:
"To be honest with you, I didn’t even expect it to be read, let alone read out. For me, it was quite empowering because I’ve obviously had years and years of not being listened to, or being dismissed, or being told there was nothing wrong with me...Having a voice in Parliament has made me feel definitely more empowered to try harder to be heard, to be listened to. It’s given me confidence."
That confidence has since led her to raise the issue with her employer, and put herself forward as a woman's workplace health champion.
"It’s definitely motivated me to do more. If Alec can talk about it to those MPs, then I can talk about it to my employers and people at work... I would like to help them get the Endometriosis Friendly Award and I would like to put myself forward for women’s health champion in the school as well. Having my story read out in Parliament has certainly helped me to feel I can probably do that"
Talking more openly about her experiences has given her colleagues the confidence to speak out too:
"It’s kind of opened me up a bit more. Every female member of staff I've opened up to about my experience has talked to me about similar issues with their own menstrual health. It's been really good to be able to talk openly with each other."
Since then, Kathryn has continued to advocate for those living with endometriosis, and has appeared several times in local and national media.
This is her story:
Endometriosis in the House of Commons chamber
Further debates and questions in 2020
Endometriosis has been raised by MPs several times since the last debate:
Find other examples by searching Hansard - the official report of all Parliamentary debates.
Get involved
MPs often ask for public contributions to their debates through the House of Commons social media channels:
And the House of Commons account on online forums
Upcoming debates
You can also see what debates are scheduled on the House of Commons calendar.
If a debate topic is of interest to you, contact your MP, tell them about your experience, and ask them to attend.
You can watch all debates on parliamentlive.tv.
Visit Parliament
Parliament is currently closed to visitors due to the Covid-19 pandemic, but you can attend a 360° virtual tour of the estate with one of our visitor guides.
More stories like this
- Mumsnet in the House of Commons
- Debate: Teaching migration in the history curriculum
- Debates: LGBT+ issues
Has this story been interesting? Please give us feedback.