Claire’s story – how lived experience of endometriosis led to supporting people with self management

"Endometriosis is NOT just a bad period, it’s a life changing condition that needs more research and understanding.”

“From my very first period at 13 I knew something wasn’t right. I visited my GP month after month to be told my pain was normal. All my scans came back clear. I started to think I was going crazy. How could lying on the bathroom floor night after night in pain be normal?

Many years passed. My social life wasn’t the same as my friends’ and school work suffered as I had to take at least 4 days off every month because the pain and heavy bleeding kept me in bed.

I got pregnant when I was 18 and it was the best 9 months of my life – no period, no pain.

I gave birth to my son Declan in January 2000 and was just getting used to becoming a new mum when boom, my period hit like a ton of bricks. I was back to lying on the bathroom floor and visiting my GP monthly. Over the years I had many hospital admissions. It wasn’t until the age of 26 that I was taken seriously, 13 years after I started having symptoms.

I saw a lovely Dr who told me they thought I had Endometriosis.  A few weeks later I got a laparoscopy which did indeed prove I had Endometriosis. In fact, I had stage 4 deep seated endometriosis, the most severe stage. After my surgery I was relieved as I finally had an answer to what had been causing my pain – little did I know my endometriosis journey was just beginning. Endometriosis has NO cure.

I have had to have surgery on average every 2 years since, each time spending 2-3 nights in hospital including stays in the ICU with each surgery getting more and more complicated. I sadly had a hysterectomy at 37. I’m back on a monthly injection to block the hormone oestrogen in my body (a treatment also used for advanced breast cancer) while awaiting further surgery as I have suspected endometriosis in other parts of my body.

Endometriosis is NOT just a bad period, it’s a life changing condition that needs more research and understanding.”

Claire and her friend and colleague Candice 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.

Claire and Candice 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.