Endometriosis and Parliament
How women from across the country contributed to a Parliamentary debate.
What is endometriosis?
According to leading charity Endometriosis UK:
"Endometriosis is a condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body.
"It 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. Endometriosis can affect all girls, women, and those assigned female at birth, from puberty to menopause, regardless of race or ethnicity."
Listening to your experiences
“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.
Alec Shelbrooke- 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.
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
- Endometriosis is not widely known about in workplaces, so support is lacking
- Many have lost jobs due to the policies of workplaces to the condition
- The condition has hugely negative effects on their mental health, relationships and wider circumstances.
The contributions were summarised into a brief for Alec Shelbrooke MP ahead of the debate.
He read out four of the stories:
Kathryn's Story
Alec quoted Kathryn's story during the debate:
"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 to 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"
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