Candice’s story – supporting the endometriosis community with self management

"As a community we need investment for change, we need someone to care enough to spearhead this complex yet misunderstood condition."

“My endometriosis experience has been complicated, upsetting and life limiting. It’s taken away opportunities, hopes and dreams. It has yet to steal my smile or desire to help and empower others. We all need a voice. By shouting together we might be heard. That’s why I set up Endowarriors West Lothian with my friend and colleague Claire.

Endometriosis…I never quite understood how it would shape my life. I started having issues when I was nine. I was told I have IBS. At 11 my period started. Mum explained I’d cramp a little, but this was agony with cramps that stopped me completely, pain that took my breath away. I lived with vomiting, bowel issues and UTI style infections.

I couldn’t do what others could. Friends distanced themselves and I missed school. Doctors suggested the vomiting was attributed to an eating disorder, I felt dismissed. I knew something wasn’t right. I was getting worse.

Years later I had surgery to look for endometriosis. It took two skilled operations to attempt to save my fertility. I’ve had several difficult surgeries since and been on every treatment imaginable, treatments that caused hair loss, atrophy, osteoporosis and new inflammatory disorders.

I hoped my final surgery would be the subtotal hysterectomy at age 37 including removing my ovaries and fallopian tubes. 14 days post op I got unwell. HRT triggered an episode and endometriosis spread to my abdominal muscles. I wasn’t believed until it showed up on a scan. If endometriosis doesn’t show on scans, then you are not believed and are treated as chronic pain patient.

Endometriosis can infiltrate organs. It needs oestrogen to grow. Now the last remaining oestrogen in my body has been blocked. I’m post-menopausal. My bowel & bladder are not working and are becoming more damaged.

Endometriosis does not define me, but it has dictated my work-life balance. As a community we need investment for change, we need someone to care enough to spearhead this complex yet misunderstood condition.

We are your mother, aunty, colleague, sister and friend.

We are Endo Warriors and there is no cure.”

Candice and Claire set up Endowarriors West Lothian to support women in the area living with Endometriosis. The group provides a safe space for women to discuss their experiences and to support one another with the multiple challenges they face.

Candice and Claire are jointly nominated for the Self Management Champion of the Year Award at the ALLIANCE’s annual Self Management Awards taking place during Self Management Week 27 September – 1 October.

End of page.