Gemma’s Story

I have struggled with endometriosis for over 30 years. From the age of 13, I frequented my local A&E department presenting with extreme pain, sickness and heavy bleeding. I was met with dismissive nurses and doctors who did not seem to take me seriously.

Over the years, I missed time off school, college, university and struggled with maintaining jobs. The GP put me on various types of contraceptive pills as a way of trying to manage my symptoms but, whilst I was at university, I was admitted to hospital on a regular basis due to their severity.

During one hospital admission, a gynaecologist suggested possible endometriosis and referred me for a laparoscopy. The day after I graduated, I received my endometriosis diagnosis, after 7 years of suffering and battling the health professionals. The consultant explained that my endometriosis was so extensive that they were unable to surgically remove it and so I was discharged.

Upon leaving university and returning home, I had no idea about treatment options to help me manage symptoms and live with the condition. Through the support of FTWW, I was made aware of the Specialist BSGE (British Society for Gynaecological Endoscopy) Endometriosis Centres, which nobody had ever mentioned before, including my GP! However, getting a referral to the nearest centre which, for me, was across the border, at Arrowe Park Hospital in north-west England, was not an easy task. 

Despite information from FTWW that explained the referral pathway, I was still dismissed by my GP and, because my symptoms were worsening by the month, I resorted to paying privately. Only after my endometriosis was confirmed as being very severe was I able to access specialist care on the NHS. I had a great patient experience at Arrowe Park, who offer gold-standard treatment for the condition, and had two extensive excision surgeries under their care.

As a result of the information and support of FTWW, alongside treatment through Arrowe Park, I have been extremely fortunate to have received IVF which was successful, and I now have my daughter who is now 5 years old. However, endometriosis continues to impact every area of my life, leaving me with physical, emotional and mental scars. Years of pain, and the scar tissue accumulated, have meant that I experience bowel symptoms on a daily basis. I regularly get bouts of gastritis and have to have time off work to recover. The internal scar tissue can be very painful and restrict my movement. I have also recently been diagnosed with an endometrioma (chocolate cyst) which are linked to more severe endometriosis.

Over the last several years, FTWW has helped me to feel supported, empowered and resourced during times when I felt alone, dismissed and helpless. They provide a community that will always offer a place to feel heard, including enabling me to share my story at a webinar on endometriosis with clinicians and Senedd Members. The collective knowledge and information that FTWW has is invaluable and has most definitely changed the outcome of my journey for the better.