my endo story

I'm one of the lucky ones.

Although I absolutely had to fight for it, I got my diagnosis earlier than most.

Like many of us, the signs came early but I dismissed every single one, just part of being a woman right?

In university I worked as a cashier, and remember being in so much pain that I couldn't stand upright at the till so I bent over awkwardly, hoping no one would notice, and hoping I didn't faint. Far too embarrassed to ask for a chair.

 

At 26, it became clear that something was very wrong, and I went to my GP. I was suffering from a constant pain (sometimes dull, sometimes angry), all of my waking hours, 365 days a year. This, combined with the debilitating period pain, fatigue bombs, and, unsurprisingly, mental health dips, meant that whatever this was, it was beginning to rudely interrupt my life. 

After more than a year of distressing appointments, being passed to different teams and fighting to be taken seriously, I was finally referred to a surgeon who agreed to operate as a last ditch effort to 'rule out' endometriosis, as I was told I probably didn't have it. To everyone's surprise, they found extensive endometriosis all over lots of my organs, and managed to excise (cut out) most of it.  It was a rough surgery, and an even rougher 3 month recovery. Although the surgery definitely helped reduce period pain, my other symptoms remained, and a few others joined the party (hello migraines!).

 

 

 

 

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Later that year I began my 3 years of nutrition training, and I was suddenly juggling full time study with a demanding job, managing my symptoms, whilst trying to keep relationships intact. 

 

I still had that pesky constant pain which was becoming physically/emotionally draining. I couldn't make it through a day of lectures without my head resting on my desk. The flare ups were merciless and caused me to miss work and miss out on social events. I was eating a nutritious diet and had given up alcohol, but I wasn't getting relief.

 

Like most, I kept all of this largely to myself. My internal optimism was strong and persistent, and I was absolutely determined to enjoy life to the full. Like so many of you, I just adjusted, kept my gratitude up, and carried on. But looking back, I can see that I wasn't coping well. 

"Although nutrition played a massive part, my biggest improvements were not due to nutrition alone."

As I continued in my training, things began to shift. I was learning how to tweak my nutrition to support exactly what my body was going through. I was beginning to feel some benefits, and it was empowering. Although nutrition played a massive part, my biggest improvements were not due to nutrition alone. Through my training, I was learning to see my body as a whole. I sought professional help from a skilled practitioner (who's nutrition advice I still follow today), got myself some counselling, learned how to manage my stress, and began to see some incredible progress.

After about 6 months of this (about 19 months post-op) my cycle began to normalise (first ever 28 day cycle!) and for the first time in years, I had a glorious full week of zero pain. Not to mention many other unexpected benefits (goodbye to 15 years of paralysing hayfever!).

Over the next two years, I continued to improve. The progress wasn't linear and I definitely still had rough weeks, but I knew my body better, and I was equipped with tools to look after myself well. In that time I had two more surgeries to remove the last of the endo and scar tissue. But these surgeries were nothing like my first. I prepared my body well and gave myself nutritional post-surgery support, enabling me to bounce back into life much quicker than predicted. I am blessed to report that I have had no recurrent endo growth and I feel strong.  

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Endometriosis is a complex illness and no two stories of symptoms/treatment will ever look the same. Many suffer much worse, or much less than I have, and I've been extremely fortunate.

I'm forever grateful for the brilliant team of surgeons that helped me. I am also very fortunate to have been able to study and learn the life-changing information that, along with my surgeries, has kept me feeling so well.

 

Each of us is completely unique. My story won't be your story, but your story is important.  If you can relate at all to this, my sincerest hope for you is that you are listened to, and that you are given every support possible to help you heal and thrive.