Ayesha's Story

I first noticed symptoms when I started my period at age 14. From the beginning, my periods were extremely heavy and painful, which continued for 15 years. I repeatedly sought medical attention over the years, but in 2016, I was misdiagnosed with PCOS. This left me to manage my symptoms alone, enduring heavy bleeding and iron deficiency, which severely impacted my physical and mental health.

In the past three years, my pain escalated to an excruciating level. Desperate, I visited A&E multiple times, enduring waits of 16-18 hours only to be dismissed and gaslit by medical professionals who told me it was just 'period pains'. I made numerous visits to my GP and fought tirelessly to be seen by a gynaecologist, but the waiting time was over 2-3 years. It felt like an endless battle to be taken seriously.

After pushing and advocating for my health relentlessly, I was finally sent for an MRI*. The results were both shocking and validating: I was diagnosed with stage 4 severe deep endometriosis, adenomyosis, fibroids, and subfertility. This condition affects my bladder and bowels, causes severe abdominal pain, and brings a host of other debilitating symptoms.

My journey with medical practitioners has been incredibly frustrating. Many times, I felt dismissed and invalidated, adding emotional strain to my physical suffering. However, my persistence eventually led to the correct diagnosis.

I heard about Endometriosis UK when I began researching my condition following my diagnosis. Their resources and support have been invaluable, providing me with the information and community I desperately needed.

Stories like Ayesha's highlight the urgent need for action to reduce waiting times, and improve access to care. Find more information on our campaigning work and how you can get involved in using your voice for change here.

*Content note: Not all types of endometriosis can be seen or diagnosed via imaging. Certain types of endometriosis can only be diagnosed by laparoscopy. For some, scans be helpful in the diagnostic-work up. Certain types of endometriosis can be diagnosed by scans preventing the need to undergo surgery to receive a diagnosis. For more information on diagnosis, please click here.