“Nothing could have prepared me for what mother nature had in store for me as a young woman growing and changing. From my first period at 13 I knew something wasn’t right. My period meant I was bed bound with crippling pain and nausea. I could barely sit never mind walk and get on with my daily life. It had a huge impact on my education because I’d have to take time off every month. It was also extremely lonely because none of my peers had issues like this, I felt weak. I was forever at the doctors or emergency room but was always told period pain was ‘normal’ and I just have a low tolerance to pain. I once had a doctor tell me, ‘I don’t think you are in that much pain, I think you are looking for attention.’ This crushed me and worst of all I started to question myself and whether my mind was playing tricks on me. It never got easier the older I got either. For years everyone drummed it into me that it was ‘normal’ so I just suffered in silence.
It wasn’t until I was 18 that a doctor finally said she would refer me for a pelvic ultrasound to see if anything showed up. I thank god every day I got that ultrasound because it gave the doctors enough to want to carry out explorative surgery which ultimately led to my diagnosis at age 20. I remember feeling out of it from the anaesthetic when my gynaecologist came to tell me what he had found during my surgery. I remember exactly what he said to me, ‘Your symptoms have been caused by endometriosis which has grown deep into your pelvic organs. We removed it so you shouldn’t get pain anymore.’ I knew nothing about endometriosis so trusted my doctor and his knowledge because that’s what you do. I remember just feeling this wave of relief wash over me. I finally saw a future where nothing could get in my way and I couldn’t wait. Everything was good for around 6 months then all my symptoms came back worse than ever before. I was confused and angry this had happened, so I went back to my gynecologist who was just as surprised as me and was very hesitant to help because he was so sure I shouldn’t be in pain anymore. He decided to repeat the surgery again, but in the meantime induced me into an artificial menopause. Experiencing menopause at 20 years old was really defeating for me as a young woman. The night sweats and hot flushes, the nausea and upset stomach and my hair started falling out. I didn’t feel like a 20 year old and these symptoms were just as awful as the pain.
I had a second surgery 2 years after my first where they found the endometriosis had grown back. I felt like I was right back at the beginning. The recovery was harder from this surgery and my symptoms never really got better. My doctors didn’t know how to help me. On multiple occasions I would ask if there was anything I could do to help and their best advice was for me to just get pregnant. It’s completely inappropriate considering endometriosis causes fertility issues for many women, but more importantly, how was I supposed to bring another human into the world when I could barely look after myself?!
I didn’t have any relief after this surgery like the first time around and I wanted to know why. I was fed up my body letting me down all the time and I was angry at this condition (which I learned at this point had no cure) for taking so much away from me. I went on a mission to educate myself as much as possible and find like minded people because at that moment no-one in my life could relate to what I was going through so they could never really understand how it felt.
I created an instagram account in 2015 called @myendostory where I started sharing my journey with this condition. I not only found support in an amazing community of those who could relate to life with a chronic illness but I also learned so much about myself and this condition. It gave me courage to be my own advocate and my account quickly became my safe place where I could be completely open and honest about the good and the bad times living with endometriosis. I realized I wasn’t alone in this journey and my story wasn’t as unique as I thought. That drove me even more to raise awareness about my illness because it’s incredibly common yet no-one has heard of it or talks about it. Doctors knowledge is minimal at best unless they’re a specialist and it is a very misunderstood illness that carries a lot of stigma.
It sounds silly but instagram changed my life. The wonderful people who follow my journey have gotten me through some of my darkest days. They inspire me daily to never give up in my fight and to keep doing what I’m doing. It feels so good to receive messages 4yrs on saying I’ve helped them on their journey. To hear I’m helping people makes it all worth it. It can be scary to put yourself out there online and at times I’ve felt vulnerable, but I don’t regret sharing my life so openly.
I wouldn’t wish what I go through on my worst enemy. At 23 I had to leave my job because I couldn’t get out of bed with the pain. I didn’t feel sexy or womanly anymore. My boyfriend became so worried about hurting me we would go months without being intimate. He knew sex always left me doubled over in pain and didn’t want to add to my suffering. He has always been so understanding and for that I’m incredibly thankful. As my health has deteriorated he has been there supporting me in every way he can.
As much as I’ve lost to this illness I feel like I’ve gained just as much. My outlook on life has changed and I’ve learned to take advantage of the good times and to focus on what’s important. I learned I am brave and strong to go through multiple surgeries and treatments that have messed up my mind and body. I’ve gained focus and drive to use my experiences to support and educate others about the impact chronic illness has on our lives. I am able to use what I’ve learned on my journey to support others how they supported me. I’ve even raised awareness through my local newspaper which was a huge highlight in my journey. I have learned so much about my body and endometriosis I’m better equipped to advocate for myself at doctor’s appointments.
I’m almost 26 and have recently just had my 4th surgery to remove more endometriosis. My journey is still ongoing, I’m still unable to work and I’m still in a lot pain but I have hope there is a light at the end of the tunnel.”
This story was submitted to Love What Matters by Nicole Flanagan. You can follow her journey on Instagram here. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
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Read more stories of endometriosis survivors here:
‘Every time I looked in the mirror I saw the girl with Endometriosis. The girl whose brother died. The girl who had given up. I was done being that girl. I wanted to feel beautiful again.’
‘When I was 19 I woke up screaming in pain, as if I was in labor. A million knives were stabbing my stomach. I tried to get to the bathroom, but I couldn’t stand. It became a regular occurrence.’