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.

Purchase “Endo Warriors”

You can purchase an MP3 copy of “Endo Warriors” here. You will receive an MP3 file of the song e-mailed straight to your inbox within 3 business days.

A$1.99

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

5 Stages of Endo*

                                                                             *Not scientifically proven. 

‘Uterus.’ There, I said it! Uterus! Periods. Ovaries. Fallopian Tubes. Bleeding. Tampon. Rectum. Hormones. Bladder. Cervix. Menstruation. Vagina. Discharge. Pelvis. Pads. Endometriosis. 

Awkward.  

These words are often avoided. They’re not ‘kosher’ and they make people cringe. Slipping them into a conversation causes tension and awkward-turtles, but if I keep my mouth shut and stay silent, society remains ignorant.

For me, these ‘uncomfortable’ words are normal topics of conversation. Conversations that cost hundreds of dollars and occur during painful, exposing, vulnerable, demoralising and uncomfortable ‘internal examinations’ that make a pap smear feel like a stroll in the park. Conversations with a plethora of in-depth questions about the most intimate details of my life – sex, bowel movements, urination, contraception, pregnancy, PMS, weight, fractured relationships and mental illness… Oh, did I mention these ‘chats’ are with complete strangers? Unfortunately, when you’re chronically ill, second, third and even twelfth opinions are often necessary.

Ironically, I have found conversations about Jesus, faith, religion and politics are easier than talking about a disease that affects the reproductive organs of 1 in 10 females worldwide.

Stage 1: Faking it 

Courtesy of PCOS, acne sprouted when I was 11 and once puberty kicked in, my face resembled a pepperoni pizza. At 15 I started taking Roaccutane – a potent pharmaceutical to treat cystic acne. Falling pregnant while taking Roaccutane guarantees a deformed foetus, so the dermatologist refused to prescribe it unless I also took the pill (which never made sense as I wasn’t sexually active).

Within a few months, the chronic abdominal pain started. The result: x-rays, ultrasounds, specialists, painkillers, frequent school absences and a colonoscopy. Diagnosis: psycho-sematic pain. It was all in my head. Treatment: psychology and cease taking Roaccutane. I was a perfectionist with anxiety falling behind at school and an extrovert isolated from the world. Rumour was that Alex was “faking it” and it wasn’t long before I started to spiral into a dark, damp hole I couldn’t escape. I was in pain all the time and there was no physiological cause. I never finished the course of Roaccutane and I stopped taking the pill. A few months later the pain resolved, but ovulation and menstruation had became hell. No one suspected a gynaecological condition or that ‘the pill’ was the culprit.

Stage 2: Diagnostic Conundrum

Fast-forward 5 years: the pain returned less than three months after my wedding (and four months of hormonal contraception). I took over three months sick leave and deferred my third semester at college. Again: scans, ultrasounds, blood tests, specialists, painkillers, weight gain, isolation. Again: no answers. I was a ‘diagnostic conundrum.’  

Stage 3: Diagnosis

An ovarian cyst eventually showed up on an ultrasound, so I booked in for a cystectomy. After six months on the surgical waiting list the cyst resolved itself. Instead, I had a diagnostic laparoscopy (keyhole surgery of the pelvis) where the gyno found endometriosis, a tissue similar to the lining of the uterus found outside the womb. Turns out I also have PCOS. Unfortunately, treatment did not stop the pain, but I had a name! Oh, the relief and closure. A diagnosis meant I wasn’t crazy! 

There were legitimate medical reasons for the constant pain, chronic fatigue, cramping, nausea and bloating. I finally understood why I had persistent acne, headaches, heavy periods, skin tags, difficulty losing weight, erratic mood swings, a dodgy immune system and pain during urination, bowel movements and sex.

Stage 4: Grief

What followed was a three-year process of watching all I deeply valued in this world fall away. I lost control of body; my nervous system was overworked and my mind was dulled with painkillers. The depression worsened and my financial security vanished. I had to leave my amazing job and eventually my marriage completely dissolved. I left the life I had built in the city to return to my hometown, move into my Aunt’s granny flat and share a bed with my mum. (I actually have no idea how I would have survived without such an amazing family!)

I ceased being an independent adult. I was 24, divorced, obese, unemployed, severely depressed, unable to exercise or even stand for more than a few minutes, incapable of doing my own laundry (and most other housework), living on frozen meals, dropping and breaking my valuables, constantly losing stuff and sharing a bedroom with my mother. I was like a dependant child, living in a dark, damp pit with no exit plan. I had such regular appointment, my GP became like a best friend.

By society’s standards I was a complete failure, Darwinism says I should have died years ago. I spent five years grieving the death of my dreams, goals and hopes I had for my life because there is no cure for endometriosis

Stage 5: Acceptance and Healing

I never stopped fighting for my health. After ten years of symptoms and five and a half years of non-stop pain, by the grace of God, the severity of my symptoms decreased. 

It took:

  • permission and space to grieve,
  • three surgeries,
  • trialling Visanne,
  • thousands of dollars in (conventional and alternative) specialist fee’s,
  • a willingness and determination to try almost any treatment options
  • improving my mental health,
  • forming emotional and medical support teams,
  • being active in the endometriosis community and sisterhood, 
  • taking the opportunity to participate in the documentary “Endo & Us,”
  • engaging with endometriosis creatively by expressing myself through photography, art, music and writing (click here to hear a song I wrote),
  • 100% dedication to an intensive chronic pain program,
  • taking the initiative,ignoring ignorance, never giving up,
  • and finding faith, hope and acceptance to finally be ‘okay.’

Sure, I still feel uncomfortable, bloated and nauseous. I cramp regularly and remain tired and in pain 99% of the time. But my flare-ups are shorter, less intense and not as frequent because I no longer react emotionally to the symptoms. Acceptance has led to spiritual, emotional and physical healing. I can now do basic housework, cook, socialise and exercise. I have a fulfilling part-time job, started losing weight, travelled, stood in the middle of a mosh pit and started my Masters degree.

I smile and laugh now because through the pain, the fight, the sleepless nights, the isolation and rejection, the lies, the heartbreak and the suffering my faith has developed. God never ceases to sustain, challenge and strengthen me as I eagerly wait for my restored, New Creation body that will no longer be plagued by endometriosis, PCOS or depression. Chronic pain has helped me find tangible hope and now my faith is solely in God, His holy and never-changing character and His perfect plan.
It saddens me that ten years from the onset of symptoms to a diagnosis and recovery is common but it will only change when we ‘end the silence.’

So for the sake of 178 million women around the world, I will fight, advocate and educate for increases awareness, research and a cure. I will continue to engage in awkward conversations on behalf of other adolescent girls and adult women who are being told the same thing in 2016 – “there is nothing wrong with you. It’s all in your head.”

So, this is me – Alex. I have endometriosis, it doesn’t define me, but it has changed me and taught me to be bold. I had endo removed from my rectum and cervix. My uterus aches, my ovaries have cysts, my cervix cramps, urinating hurts and my period sucks.

Now your turn – go on! Say it, just once. I dare you. ‘yoo-ter-uhs’…

…see, it’s not that scary 😉

Side Note: Through all these stages, I’ve always been extremely grateful to have such a wonderful and supportive family, both earthly and spiritual. I praise God every day for Jesus sacrifice, the Fathers love and the Holy Spirit’s power to transform my heart and heal my body. I give thanks for some tangible hope as I eagerly await the perfect and restored body I’ll have in the New Creation.