Claire, Candice, and Endo Warriors

Our perception of endometriosis is that it is simply a bad menstruation. But in reality, for the 1.5 million women in the UK who suffer from endometriosis, a bad period is just one of 34 symptoms associated with this condition. Endometriosis is where tissue similar to the lining of the uterus grows elsewhere in the body, causing a painful concoction of problems. Unfortunately, there is no cure and treatments that may work for one woman may not for another; this is why the work of the Endo Warriors and EXPPECT (Excellence in Pelvic Pain and Endometriosis Care and Treatment) at the University of Edinburgh is so incredibly important for women living with endometriosis.

The Endo Warriors are an independent support group born out of necessity by founders, Claire and Candice, in 2017. Both are exceptionally honest women and mothers who have shared their journey with endometriosis with many others. They emphasised how life-limiting, impacting and invisible the condition has been since their first periods at age thirteen. It was not until they reached their early twenties that they each got a diagnosis. Since then, Candice has had fourteen surgeries, four of these in her twenties to allow her to get pregnant. Claire has endured her own fair share of treatments, including multiple nine hour surgeries and the threat of a stoma bag after a particularly difficult procedure. However, when asked what the hardest part of living with endometriosis was both women were in agreement: time lost with their families, especially their children. They mention not attending family occasions, parties, or events. They both emotionally recall trying to hide their pain and tears from their children as they walked them to school or watched them play football. They feel it steals their dignity, which no woman should ever have to endure.

The Endo Warriors have nearly 340 members who offer each other support, laughs and solidarity in their monthly meetings to combat the isolation, lack of empathy and knowledge, and chronic pain associated with endometriosis. They embody the term warrior in raising awareness and fundraising, previously completing the charity Kiltwalk with the EXPPECT researchers, and leading a class on endometriosis for Edinburgh medical students. This work and collaboration with EXPPECT is hugely important to the Endo Warriors, as it directly benefits their local community of women. A huge achievement for them this year was lighting up Edinburgh Castle, and other monuments worldwide, in yellow for Endometriosis Awareness Month. Recently, they participated in our March in March campaign, raising an incredible £2,000. The aim was to walk 31 miles or 31km in March. To some, this may not feel like a difficult challenge; to women living with this condition and the chronic pain associated, it can be incredibly difficult to walk even a kilometre or mile a day. Unfortunately, Covid-19 impacted their original plans to complete and celebrate their final miles together, or do their celebratory conga line march at their music night. However, this didn’t stop them celebrating their success in smaller ways with Zoom meetings.

While aspects of endometriosis may slow them down, their determination and passion to raise awareness and support one another drives them to continue the fight even on their darkest days. They have big plans for next year’s March in March and Endometriosis Awareness Month. They hope to have an endometriosis tree in Livingston decorated yellow, where women can decorate and leave a stone around the tree to raise awareness of endometriosis and its impact in their community, and they would welcome anyone who would like to get involved professionally or voluntarily with them and these activities. If you do want to find out more please get in touch.

Related Links

EXPPECT (external link)