My Endo Story

This is a subject I often find very difficult to talk about. I can’t find the words to describe how it makes me feel a lot of the time, and I often hide the pain beneath humour and self-mockery. I’ll be honest in this article – starting with me admitting that this post has been 3 years in the making because I cannot talk about this without bursting into tears or without fear that I will be treated differently by friends and family.

2009 was a pivotal year for me. I had just started university, I’d moved out of my childhood home, and I first started noticing the pain.

It felt like blisters. One A&E visit (of several that year) ascertained I had Chrohns. A barium meal scan, 2 isotope scans, ultrasounds, MRI scans, endoscopies – all ruled that out. I was then told I had IBS in 2010, that I was an “anxious person” (the consultant had never met me before this meeting) and to go away.

Back again in 2012, in agony. Another endoscopy. Nothing. It was getting worse. I remember sitting at the bus stop going home from uni in silent, panicky tears because the pain was so incredible I couldn’t breathe. I went back, terrified I had something serious. IBS again. Go away. I’d lost a year of university already.

In 2014, I went to my local NHS walk-in centre after fainting on the train home from work in London. The GP at the walk-in centre was very concerned and sent me to the OB-Gyn department at the hospital. Hours in A&E, throwing up, eventually given a bed at 3 am in the Gynae ward. I sobbed as my dad walked out of the doors. I was all on my own in a strange place. I didn’t want to be there.

I knew I had a cyst. I met a doctor who was insistent I was constipated and I was seeking attention. I begged them to do an ultrasound, which they did the next day – lo-and-behold, a 5cm endometrioma on my left ovary.

I was assigned to a Gynae consultant, who over the next 2 years, would reluctantly see me every month or so, tell me I didn’t have Endometriosis, find yet another cyst, and insist that I didn’t need surgery.

I got a second opinion last year, and I had an ablation laparoscopy which resulted in a diagnosis of stage 4 Endometriosis. I was relieved. I was told my pain was made up for 7 years. I had adhesions on my left ovary, my bladder and uterus were stuck together via my Pouch of Douglas. My left ovary has stopped working, and my organs have been irreparably damaged.

That was October last year. The pain came back a month or so afterwards. It’s soul destroying. I’ve been told to have children in the next 5 years or to have Pro-Strap, a menopause injection which has been proven in many studies to have no effect on Endometriosis. I’m now begging and pleading all over again to be referred to a specialist in Birmingham, who can excise all endometriosis.

All it would have taken is just one person to believe me. One person. I’ve lost 7 years to pain and insatiable exhaustion that no amount of sleep or rest will sweep away.

I am not the only endometriosis sufferer with this story. 1 in 10 women around the world have this disease, and I’m sure you’ll hear a repetition.

I cope by going to bed at 8 pm, sometimes 7:30 pm, letting down my friends and family at social gatherings by being too tired/in pain to come, taking dangerous opiate painkillers as prescribed by my GP, and clenching my teeth together with the pain unconsciously my jaw aches.

By the way, you can sponsor me running 10k for Endometriosis UK right here!

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