Another Endo Story

Another Endo-Story blog header.pngSo, it’s 10pm on a Tuesday night and I’ve just finished watching SBS’s Insight episode (watch it here) on Endometriosis. Less than five minutes in, my chest was tight, my mouth was dry and my head was racing.

Hearing stories from other women who have been dismissed, misunderstood and ignored for years sent me back to 2013/14, before I had learnt to manage my symptoms well. I had been experiencing level 6-7 pain every day for a few years now.

As I watched Insight, one memory jumped in front of me, waving its arms, demanding my attention. What better way to process this loud and intrusive memory than to share it by telling Another Endometriosis Story?

I was living in a granny flat with my mum, under my aunties house. My mum was out for the night, I had the place to myself. I decided to have a shower before going to bed. My body started to relax as the warm water was cascading down and I could smell the sweet fragrance of my strawberry body wash…

BAM. OUCH! FAR OUT!!!

I hit the shower floor as my pelvis was stung with a sharp, intense pain.

I’m not sure how long I lay curled up on the shower floor, the water now feeling like small bullets hitting my back before I was able to reach the tap to turn it off. Somehow, I managed to wrap myself in a towel and attempted to get into my bed – I limped about 5 steps before I collapsed to the floor again, wearing nothing but a towel.

My aunty and uncle were home upstairs. I cried out ‘help’ as I yelled in agony. Surely someone would hear me or come downstairs to use the laundry. Surely. This continued what felt like an eternity. No one was coming downstairs.

I finally noticed my phone on the floor, about 5 meters away from me. I curled into child’s pose, closed my eyes and did some deep breathing, preparing my body to be dragged across the floor with the little strength I had. I may have added carpet burn to the mix, but I had my phone. I called my aunties home number – my uncle answered, ran downstairs and yelled for my aunty. He phoned for an ambulance while she dressed me. Together they lifted me from the floor and manoeuvred me to the bed.

We waited until that glorious green whistle was in my hand and the methoxyflurane powder was in my lungs, numbing the pain (not completely, but enough). My aunty and I managed to explain my medical history, that I had Endometriosis and PCOS – but as is with many of us EndoSisters, that probably caused more harm than good. You know, those painful periods – suck it up. It’s just hysteria or hormones.

That night I lay in A&E being injected with morphine, crying and unable to sleep because the pain wouldn’t relinquish. Eventually, I insisted my aunty go home and get some rest. In her absence, the nurses tried to ignore me and any interaction I did have, I was labelled a liar, a drug addict and a drama queen. I was told that if I stopped crying I would experience pain relief. The crying stopped, the pain didn’t.

The sun eventually rose and I was beyond exhausted, completely drained. Surprise, Surprise – my blood tests showed nothing, I was a perfect bill of health. The registrar on duty and I briefly chatted before discharging me with some tramadol and a ‘good luck.’ No pain clinic referral, no gyno consult, no GP letter, no ultrasound – nothing. Just a painkiller that interacted dangerously with my other medications and a token pleasantry.

I wish I could say this is my only traumatic endo-pain-flare-up story, but it’s not. It wasn’t the first time and it’s definitely not the last. In Australia, we grow up learning that doctors and nurses are safe people and that hospital is a safe place to go when you’re not well. Sadly, healthcare professionals can sometimes be the worst perpetrators* in stories where women are demoralised, dehumanised, undermined, ignored and accused of lying about their pain.  Sadly, our hospitals are not trained and equipped to treat chronic pain ethically and effectively.  Sadly, hundreds of thousands (I feel like this is a conservative number) of women with genealogical disease and pelvic pain are treated this way.

Sister, you are not alone in your physical pain, your wounded heart or your endo-story. They estimate there are 176 million of us worldwide. 1 in 10 women is a LOT and every time the media shines a light on Endometriosis, the world becomes a little less ignorant and grows a little more compassionate. So, Sister, please continue to tell this story we share.

Friends, please listen to our stories and believe our pain is real and don’t compare any of us to another individual. If you don’t understand; ask questions, listen well and continue to learn about this silent epidemic – because 1 in 10 women have Endo. So, if you know 10 women, you know Endometriosis.

*I know this is a bold statement – there are some wonderful, empathetic, humble and knowledgeable ones out there. I have an amazing healthcare team around me and I am forever grateful for them.

 

Meet Saki

by Caz Morton

Meet my black, sassy brother in Christ! We have so much in common – we both love fashion, are black, love Jesus and have bodies of steel. Meet Saki (this story has been written with permission).

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As I was editing the above image, my mate looked over & said jokingly, “wow! Saki is a poser & full of sass. I love this guy!” And we do all love him. I can see how much God has grown him through the relationships he’s built in Kids EE. I can also see how God has protected his life, equipping him for a ministry to a niche of people who are often not reached.

I arrived in Fiji with a wall up – the road in Tonga was bumpy for personal reasons, but Saki flawed me. God unexpectantly put him in my path & I’m so grateful He did. We connected immediately with our love for fashion, and that’s without even sharing and connecting with the deepest parts of our Christian walk.

Saki has plenty of reasons to walk away from God & complain, considering what he has faced in life. I asked Saki about struggles and he didn’t hesitate as his eyes lit up while he shared how God had kept him alive. We bonded over shared, messy health experiences, in particular how people’s attitudes change when you something is physically wrong. Unlike Saki, mine is now invisible, but there was a time my injury was public – when I was in my back brace for 5 months. This caused relationships to change drastically. It was as if I had caught the black plague, apparently unapproachable. Or, as Saki said you get “those pity eyes” as the norm. When an accident occurs, it’s hard to see how it affects your family & friends. You know they want to help, but you have this underlying guilt of ‘I don’t want them to have to go through this or bare my burden’. Guilt: it’s an emotion Satan loves to vandalise and explore, however, it’s a reality you have to come to terms within your own walk. However, there is great power over darkness and shame when you have people who understand your unique situations.

Saki had bone cancer when he was 10. They amputated his leg, although, in hindsight, they could have saved his leg. This angered me so much, but Saki was quick to say “I wouldn’t change it, what God has taught me, I would never change. It’s given me opportunities I never would have had and helped me to see God in a different light.” He had cancer again 13 years ago but praise God for remission over a decade. He shared with me struggles with self-image, his purpose when he was younger and being picked on for being different. I wish my 15-year-old self was in Fiji when Saki was ten – I would have cartwheeled into the bullies face, held Saki’s hand & prayed the bullies away in Jesus name. But he didn’t need a protective sister, he has a protective Heavenly Father. Having those struggles forced Saki to trust God and fix his eyes on Jesus saving plans. He is clothed in the armour of God (Eph 6:10-18) & when adversity comes he’s equipped in multitudes. People better watch out!

Saki is also the eldest of 6 & has a heart for serving in kids ministry (another reason we connected). I think if he could, he would adopt half of India, as I would with Sri Lanka. I love how God has been equipping him for a huge ministry, meanwhile, he resides in Fiji. Please pray for opportunities to share his unique faith story. What made my heart bounce was whilst on mission is when he shared with our Kids group “I can’t sit around worrying when I’m alive. God has helped me survive every day to possibly help someone else in need who might be struggling the same way.” What Joy God brings in the life of my brother Saki, he’s touched my life on so many levels, he is all S.A.S.S. in a good way:

Saki:
Saved
Amputee
Survivor
Servant

God has protected us both in similar ways, the emotional scars are healing & both being restored (2 Cor 5). For now, will continue to survive in Jesus name.

 

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Meet The Writer: Caz Morton 

Adopted by Grace, adopted from Sri Lanka.
Past handstand queen,
Proud member of the fashion police.
Recovering spinal and sternum injuries.
Follow@jeanellen on Instagram,