Emily's Story

If you are concerned about your symptoms and you are continuing to be dismissed, don’t be afraid to advocate for yourself as you know your body better than anyone.

My periods started at 12 years old, they were unbearably heavy, I was losing loads of blood and I became anaemic. The GP didn’t investigate further and just put me on the pill. I was on the pill for four years and it stopped my periods for this time. However, when I turned 16 I was becoming more and more unwell with the side effects of the pill. I decided to come off it. I was feeling much better for a while and then on my 18th birthday I collapsed from the pain in my tummy - I thought maybe it was just ‘a bad period’, but unfortunately this was only the beginning of my journey with undiagnosed endometriosis.

I pushed through continuous pain, heavy periods, fatigue and sickness for a long time as every visit to the GP or hospital, I was dismissed and ignored. They just gave me a wide variety of pills, painkillers and antidepressants. I was told I was ‘being dramatic’, and that everybody ‘had bad periods, you just have to get on with it’. 

It was August Bank Holiday 2019, at the age of 21 I was fighting for my life with sepsis, I was rushed into hospital via ambulance and my family were told to prepare for the worst. I remember feeling like I was dying and I was just so unwell. I spent a week in hospital on the strongest IV antibiotics. I lost a stone in weight and I had to gain strength to walk and talk again. During my hospital stay, I was in excruciating pain in my pelvis, the pain was unexplainable. My tummy was distended; I was sick and weak. After an hour long MRI, immediately a consultant came to see me with the results - I was told in the most horrible, abrupt manner ‘Emily, you have a cancerous tumour in your left ovary, it’s huge and it doesn’t look good’. I was so upset and my mother was with me, we cried and all the years of dismissal came spiralling down to this point - I was angry. The way I was told was not acceptable and the lack of compassion was awful. I was so grateful to the nurse who helped us that day.

After further investigations, the diagnosis of cancer was incorrect and I was then diagnosed with severe endometriosis and adenomyosis. I have since undergone two privately funded (due to NHS waiting times of nine years) life saving surgeries, saving my failing kidney - removing endometriosis from my ovaries, womb, bladder and bowel. I’m currently in chemical menopause at 25 and navigating life with daily, chronic pain, nerve damage and a variety of life changing symptoms from endometriosis. Since there’s no cure for endometriosis and limited treatments that don’t necessarily help, it's a case of living in chronic pain and a variety of symptoms that have a huge impact on my daily life - I’m hopeful everyday for improved care.

It took me nine traumatic years to receive a diagnosis of endometriosis, it shouldn’t have been this way. Since my diagnosis I now campaign for change, as a women’s health advocate I regularly write articles on my experiences to raise awareness, attend meetings at Parliament and the United Nations as well as speak about my journey.

Awareness is key to creating change and improving funding into research for Women’s Health and Menstrual Health.

I’m hopeful that with open conversations, empowering one another and breaking down stigma, future generations will be listened to, women will not be dismissed and that we will have access to the healthcare we deserve to live a fulfilling life.

If you are concerned about your symptoms and you are continuing to be dismissed, don’t be afraid to advocate for yourself as you know your body better than anyone. If you need, ask for a second, third or fourth opinion to ensure that you are being listened to. If you’re not happy with the medical advice you have received and feel you’re not being taken seriously, then fight for your body and don’t be afraid to. I’m truly grateful for charities like the incredible Lady Garden Foundation who provide amazing resources to educate and raise awareness as well as support women. Whether it will be endometriosis, gynae cancers, fibroids or adenomyosis, I am hopeful we will see the change we want to see for Women’s health. 

Thank you so much to Emily for sharing her story with us and continuing to advocate for women’s health.💗