Eliza’s Journey with FTWW

I was around 13 years old when I first started experiencing symptoms that I now know were linked to endometriosis. At the time, I had no language for what was happening to me. I just knew I was in pain.

For many years, symptoms had a huge impact on my life. I missed significant amounts of school, struggled to concentrate, and felt unwell even outside of my periods. I rarely spoke about what I was going through and felt embarrassed and ashamed. I began to internalise the idea that I was weak or overreacting.

Accessing external support through Fair Treatment for the Women of Wales (FTWW) was life changing. For the first time, I felt understood, believed and less alone. Connecting with others who shared similar experiences reduced the isolation I had felt for years and gave me access to trusted information.

The support I received also gave me the confidence to advocate for myself within healthcare. Even now, I continue to rely on the FTWW community for trusted updates on women’s healthcare in Wales and value being part of a supportive network. Having benefited so much from the lived experience and kindness of others, I now enjoy sharing my own experiences and practical strategies to help people earlier in their journey, just as others once helped me.

There are also ongoing challenges within healthcare, including delays, variability in care and the need to repeatedly advocate for myself due to the lack of understanding around endometriosis being a chronic, systemic inflammatory disease with gynaecological manifestations rather than simply a bad period. Even following two excision surgeries, my endometriosis has returned. Unfortunately, I have recently been unable to access specialist excision care because my referral was rejected due to living outside the local service area. This has reinforced to me that access to specialist endometriosis care is still not equitable across Wales, and where someone lives should not determine whether they can access the expertise they need.

Despite these challenges, I remain hopeful for the future of women’s healthcare in Wales. Seeing the work that Fair Treatment for the Women of Wales continues to do to improve care, including its contribution to the development of Endometriosis Specialist Nurses and Women’s Health Hubs, gives me genuine hope that future generations will experience earlier diagnosis, better support and fairer access to care than many of us did.

I continue to be inspired by the strength, resilience and compassion of the women I have met through FTWW and leading my local Llantrisant Endometriosis UK support group. I am constantly in awe of how so many people have transformed their own lived experiences into opportunities to support, educate and advocate for others. Their determination to turn difficult experiences into positive change has inspired me to do the same.

I now feel far more able to navigate these challenges and speak openly about them. I have more confidence in recognising when something is not right, seeking the right support, and communicating my needs clearly. I no longer see myself as ‘overreacting or weak’, but as someone who understands their condition, deserves appropriate care, and is empowered to seek it out.