#

My endometriosis journey: Hayley’s story

For a decade, Hayley suffered crippling symptoms without knowing what was wrong. Diagnosed at last, she is now able to control the condition that was ruining her life, and uses her knowledge and expertise to help others

The first symptoms of endometriosis – a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes – started to show when I was 13 years old. I didn’t know what a ‘normal’ cycle was, and each month I dreaded my period. I experienced heavy bleeding, cramping in my abdomen, and blood clots.

Over the years, my symptoms got worse, and I’d miss school and social events due to the unbearable pain that made me sick and collapse, often leaving me bedridden for days at a time.

For more than a decade I went back and forth to the doctors, and was told that what I experienced each month was ‘hereditary period pain’. I even got asked: “Are you a hypochondriac?” I felt no one really understood what was going on, or what I was going through.

Examinations by my GP would end with: “It’s period pain, and unfortunately, hereditary.” Another prescription of codeine would be handed over. I was put on medication and birth control to help manage the pain, which would mask the symptoms for a short while, only for them to return worse than before.

After graduating from performing arts college in 2007, I moved to London to embark on a career in TV. During this time, the pain I experienced when my period arrived was unbearable. I was unable to walk, unable to even carry myself to the bathroom. I’d take days off due to the pain. This eventually led me to quit my job after I was told to “man up”, and “You don’t even look sick.” I decided to leave London and take some time out, as my physical and mental health was at an all-time low.

During this time, I lived in the French Alps and I worked as a chalet chef, where I developed my love for baking and cooking. I then travelled and ate my way around south-east Asia.

When I returned from my travels, I began work in a corporate environment. Despite having lived with endometriosis symptoms for many years, it was a morning commute which finally started my journey towards a diagnosis.

After stepping off the train, I felt a pain in my left ovary. It felt like something had burst into flames and spread around my lower abdomen and across my back. I somehow managed to walk to the office and the next thing I knew, I was in the back of an ambulance being told I had suspected appendicitis. I was X-rayed, had tests, and was assessed by different doctors. Finally, one said: ‘‘You’ve probably experienced a ruptured cyst.” After that, I was discharged.

Drained and deflated, I started to believe I was a hypochondriac. I took matters into my own hands and booked an appointment with a private gynaecologist. She assessed me, spoke with empathy, and recommended I go for food allergy tests and an internal ultrasound scan.

At the scan, they detected some cysts on both ovaries. I was told they were relatively small, but that it would be sensible to have them removed. They booked me in for keyhole surgery a couple of months later, but the surgery revealed I had a cyst 10 times the size they had estimated. My left ovary was damaged, and some of it was removed during surgery, along with the cyst and the endometrial tissue growing around my fallopian tubes and womb.

It was now apparent that I’d been suffering from severe endometriosis for 10 years. My gynaecologist said she had never seen a misdiagnosed case like mine before. I’d suffered in silence, undiagnosed for a decade, with one of the worst cases of ‘endo’ she had ever seen.

After I was diagnosed, my life changed. Now I knew what I was battling, I could focus on how to beat it. After I recovered from surgery, I took various food allergen tests and my results showed gluten sensitivity and lactose intolerance. I started to think properly, for the first time, about nutrition, and the integral role it plays in health and wellbeing. I also read everything I could about endometriosis.

Although there’s still no cure for ‘endo’, I found that when I cut out all wheat, gluten, dairy, and processed foods, some symptoms were eliminated, and slowly I began to take control of my body through the healing power of food, and got back that glow I’d lost.

“I’ve been able to turn something that once had a hugely negative impact on my life, into a truly positive one”

Food and travelling have always been two of my biggest passions, and in 2014 I left the UK once again to explore Indonesia, Australia, New Zealand, and some South Pacific Islands. I eventually ended up living in New Zealand, and it was there that I discovered more ways to nourish my body with foods that left me glowing and rejuvenated.

I became passionate about connecting with others and sharing what I had discovered during my journey, especially with women who suffer from endometriosis, polycystic ovary syndrome, and other chronic illnesses.

Unfortunately, in September 2016, I was diagnosed with pre-cervical cancerous cells and underwent treatment that included laser therapy. This fresh test to my health led me to return to the UK in June 2017.

I went on to study with the Institution for Integrative Nutrition to become a certified and registered health and nutrition coach, which deepened my understanding of the importance of food in managing chronic illnesses. Since graduating in 2018, I’ve worked with women on a one-to-one basis, and shared my journey.

Finally, after many years of endometriosis controlling my life, I’ve found a way to control it. I’ve been able to turn something that once had a hugely negative impact on my life, into a truly positive one. How? Through the healing power of food and listening to your body.

The journey to managing the symptoms of endometriosis can feel incredibly isolating at times, and for anyone going through it, I say: never give up until you get a diagnosis, and never settle for anything below your standards.

Rav Sekhon | BA MA MBACP (Accred) says:

Hayley’s inspirational story highlights the true challenge of living with endometriosis, especially when it has been diagnosed for a number of years, it’s evident this had a significant impact on her health. In time, and with the correct medical support, Hayley was able to get the help she needed. Hayley’s life experience now drives her forward to help other people – her pain has now grown into a source of strength.

To connect with a nutritionist to learn more about how diet can support wellbeing, visit nutritionist-resource.org.uk