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.

 

Endo Warriors

Copy of Singleness Blog

At the end of 2014, I had been experienced chronic pelvic pain for nearly 4 years from Endometriosis. I was about to leave my job because I was too unwell. My marriage was broken and in disarray. I had gained 25kg’s. My self-confidence had plummeted and I had lost hope. It felt like I was at war with this insidious disease and it had one. However, I sought support from other women with Endo and found an incredible sisterhood – particularly online. As a result, I wrote a song about living with and fighting Endometriosis.

About three years ago I had the opportunity to be interviewed for a documentary. Last night I had the privilege to sit in a room with my fellow Endo Sisters and their supporters and watch the finished product, Endo & Us. I also had my first opportunity to sing this song, ‘Endo Warriors’ for an audience, as well as share some of my journey on the panel.

I will share the link to the movie when it’s uploaded at the end of the week 🙂

I promised I’d make the song available tonight, so, here it is 🙂

In the video you will see I messed it up midway through. I was assured it just added to the performance, mimicking real life 😅.

Endo Warriors

 

So many times, you’ve heard me complain
about my life, that’s devoured by pain
From my waking moment, ’til I fall asleep at night
Endometriosis consumes my life

But I’ve found some comfort, for there are women who share,
give understanding, kindness and empathetic care:

and we are warriors and we will fight together
We are sisters and will persevere
We’re united with hope in our hearts, wearing gloves of faith
we will not give up – as we fight
to put an end to endo.

Some symptoms have plagued us for years
and we’ve lost count of the times it’s caused tears.
Our bodies don’t function the way they should
and our relationships are strained, we’re so misunderstood.

But we’ve found other sisters, with whom we share,
give understanding, kindness and empathetic care:

For we are warriors and we will fight together
We are sisters and will persevere
We’re united with hope in our hearts, wearing gloves of faith
we will not give up – as we fight
to put an end to endo.

We’ll fight for the future
We’ll fight for a cure
We’ll call for more research
We’ll courageously endure!

For we are warriors and we will fight together
We are sisters and will persevere
We’re united with hope in our hearts, wearing gloves of faith
we will not give up – as we fight
to put an end to endo.

Original Recording can also be listened to on my Soundcloud Account:  https://soundcloud.com/alexandra-ellen-mills/endo-warriors-1

Meet Dotti

So I finally got myself a new brain! Meet Annie’s sister, Dotti! Nothing like an adorable plush brain for comfort, positive association and mental illness awareness!

#awareness #breakingstigma #mentalillnessawareness #depression #brain #allyouneedislobe #iheartguts #iheartgutsplush #dottiadventures

Winterfest 2016

Winterfest is over, God in His goodness sustained me through the week in a way far greater than I could have ever imagined.

As Winterfest approached at the end of term two, I confess, I started to freak out. I know the physical drain/impact a Holiday Kids Program can have on my body – this wasn’t my first rodeo… but last Thursday God gave me what I call a gentle ‘slap’ from the Holy Spirit. How self centred I was to think that a week of telling kids about Jesus had anything to do with me. How arrogant I was to feel like my health could hinder God’s work. How faithless it is to enter a week of mission, relying on my own strength (or lack thereof). My prayer quickly changed – if I was going to get through this week and if God wanted to use me, it was up to Him to sustain me.

In 2 Corinthians 12:9, God says to Paul, “My grace is sufficient for you, for My strength is made perfect in weakness.” My response? Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.

God is faithful. I may be in agony now, but I made it through the week because of His faithfulness. I am grateful for the reminder that every step I make is based on God’s sovereign power and for His glory!

Now to rest my weary and achey body with all things pink, Annie, tea, my onesie, fluffy dressing gown, Netflix, a massive sleep in, “everyday I’m shuffling” on repeat in my head every time I walk (or more accurately, my attempt to walk that resembles a slow hobble), and the joy and peace that comes from knowing I was able to be part of the proclamation of the gospel this week.

Five Years Ago, Today…

Five years ago today I woke up bright and early, headed to Bankstown Hospital. I waited in a small room with an elderly couple until the nurse called my name. I am tagged, weighed and dressed in a beautiful white gown, socks that didn’t cover my toes and what I can only describe as a cotton, blue shower cap. I confirmed by details and hopped into bed. I had been told not to take any painkillers when I woke up, so they checked my details a second time and gave me some IV-Panadol. Not long after they wanted to be really sure they had the right person and checked my details yet again before rolling me into the pre-op room.

Enter Gyno, “so, Alexandra, I see we are doing a cystectomy today.”
“Uh, no. The cyst resolved itself; you said you were doing an exploratory laparoscopy.”
He giggles “Oh, okay then,” as he looks up from his notes.

They confirm my identity one more time before the anaesthetist gently squeezes my hand, gives me the mask and asks me to count slowly down from ten.

10… 9… 8…


I woke myself up with my own screaming a few hours later. “Did they find anything?”

It turns out, they did. Here Annie will show you what the inside of my pelvis looked like before the Gyno removed the Endometriosis (versus a healthy one).

Annie and 1st Endo (1)

Hi!

As I left the hospital a few hours later, walking in the hunched posture my body had become accustomed, a nurse said, “walk straight, you’re all fixed now.” I believed her.

Even though the surgery wasn’t a cure and it didn’t take away the pain, I was finally validated. I was no longer mystically causing myself physical pain with my mind. There was a reason. There was a disease. It was my diagnosis day.

Today marks my 5 year anniversary since I was diagnosed and look how far I have come since! Praise God!

So it with a healthy mix of sarcasm, cynicism, gratitude and hope that I say…

Happy Endoversary, Alex!

The Annie Chronicles

For those of you who were wondering why I own a uterus-teddy, thank you for asking! Yes, she freaks some people out but more than anything else, she sends eye rolls right in my direction.

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Meet Annie, my adorable, pink, fluffy uterus and follow our adventures!

People should know that eye rolls and awkwardness only fuelsmy quirkiness… but as fun as it is seeing people react to my plush friend, Annie is a symbol of something greater.

She is a psychological tool to help me associate my ‘uterus’ with kindness and appreciation, rather than the hatred I’ve felt for many years. Hating your body can be toxic and psychologically damaging, but by the grace of God, Annie has really helped me to accept my body the way it is, disease and all.

For those wondering why I called her Annie, thank you for asking! As a hormone treatment to manage the Endo and PCOS, I am taking a progesterone pill called Visanne… if you missed it, Visanne, just with an ‘i’ to make it cuter.

Annie also reminds me to not feel ashamed of my illness and to keep fighting to break stigma. As a Christian and a 25 year old Australian woman I am often mortified, shocked and appalled at the ignorance and arrogance in our society. Our culture oozes with hypocritical judgement and thoughtlessness that only turns into pain which shatters a world that is already deeply fractured. In the realm of ignorance there is often little room for genuine compassion and helpful encouragement. I encourage anyone who has a friend with Chronic Illness to stop being ignorant and support the people you love by listening, researching and learn.

Annie has helped me normalise conversations on women’s health, particularly regarding Endometriosis and PCOS, diseases that can infiltrate every other area of your life: the rest of your body, relationships, work, mental health and your sense of self.

If you’re looking for your own plush organ, you can head over to i heart guts!

Annie Moved!

Annie is pretty stoked that the internet has finally been connected in Sunnybank #netflixtime! I got my nerd on and I managed to work my way through all the modem’s manual settings to get it going! #yourewelcome @cats_pyjamas_ & @millyvanillie. #computerwizkid #annietheuterus #uterus #ovaries #distraction #painmanagement (at Sunnybank, Queensland, Australia)