Endometriosis is no laughing matter for Clipstone charity planning fundraising circus event
An online circus cabaret event is set to raise funds for a Clipstone-based charity supporting people with endometriosis.
Mum-of-four, Keri Dixon, aged 35, co-founded Endo Support United, having suffered with the condition for 24 years.
The chronic illness is so debilitating, Keri has been confined to her bed for almost a decade.
But despite the impact endometriosis has had on her life, Keri volunteers her time running the charity which aims to raise awareness of the condition, provide support for adults and adolescents with the illness, and campaign for better understanding in schools and healthcare settings.
Endometriosis – or ‘endo’ – is a long-term condition where tissue similar to the lining of the womb grows elsewhere such as around the ovaries, and inside the pelvis.
It causes painful or heavy periods and can lead to infertility, fatigue, bowel and bladder problems, as well as mental health issues.
Keri said: “I’ve been a member of social media support groups for a long time, and they have been fantastic.
“But when my daughter, Sky, started having symptoms at the age of 10, I realised very quickly there was nothing for her age group.
“The social media groups talk about some of the impacts of endo such as miscarriage or pain during intercourse, and that wasn’t what she needed.”
Keri, married to Chris, 34, teamed up with fellow mum Angela Bradley-Wells, from Yorkshire, who also found it difficult to access support for her daughter following a diagnosis of endometriosis.
The two women launched a support group – Teens with Endo – which evolved into the charity Endo Support United.
Keri, mum to Cellan, 19, 16-year-old Tyler-Lee, Sky, 14, and Caleb, 11, said: “Most doctors still believe teenage endo is a myth. Young people are presenting with symptoms – some of which mean they have to go to the bathroom
two or three times an hour – and yet doctors and school staff tell them ‘it’s just a period, get over it.’
“It’s not acceptable. Teenagers are missing school and daily activities because of the pain, but they start to think it’s just a normal period because that’s what everyone is telling them.
“Parents don’t always realise there’s something wrong, because the doctor has told them it’s normal.
“But living with endo can lead to mental health problems – we get messages on a daily basis from teenagers who are having a hard time.
“It’s also difficult for trans men, as people class it as a women’s disease, and don’t allow them to feel what they feel.
“We support everybody, because endo doesn’t discriminate.
“One of our campaigns is ‘Pride and Prejudice’ – we’re providing five counselling sessions for anyone, including LGBTQ+ and BAME people, who has experienced discrimination in healthcare because of who they are.
“We also have a list of consultants who do not discriminate and have signed an agreement with us to that effect.
“About one in nine people have endo and at present there is no cure – but there are treatments that can make symptoms more manageable.
“The earlier treatment starts, the more chance that person has of having a child, or having symptom-free episodes.
“But again, there are barriers for teenagers as many gynaecologists won’t consider surgery on under 18s, while getting any kind of treatment is difficult if you can’t get a diagnosis in the first place.
“It’s a life-long condition, but it is possible to have manageable spells.
“However, the longer treatment is delayed, or the condition ignored, the worse it can be when the surgeon goes in.
“I don’t want others to go through this. Things need to change.”
As well as offering support, the charity also campaigns for change and last year launched Project Prepared – a campaign to tackle period poverty by providing care packages including free sanitary products to young people under 19 across the UK.
Keri said: “The care packages come to us from Hey Girls, which donates a box of sanitary items every time someone purchases their products, and have been distributed to food banks and youth clubs – they are available anywhere in the UK, from my house!
“Everyone involved with the charity is a volunteer. Angela and I have an enormous amount of help from our team, who are located across the UK.
“One of our members is a circus artist who has just had surgery for endo. We’re only able to hold six fundraising events each year, and she has organised an online circus cabaret with circus artists from around the world.
“All of the artists have donated a short film they have made during lockdown and these will be presented as a cabaret.
“People will be able to watch it for 24 hours after it’s first shown and the proceeds will support all our work.
“Like so many charities, we’ve struggled to fundraise through the pandemic, so now we’re trying to rally support to help us keep going.”
The online circus cabaret, featuring acts including Mimbre Acrobats, Pocket Fluff Productions and Whitmore Acro, is on Saturday, September 25, at 7pm. Tickets are £8 and are available via Eventbrite.
For more information, see endosupportunited.co.uk