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.

 

You’re alive. You’ve survived. You got this.”

While I was looking at the 5kgs I put on during my 5 week hospital stay and thinking about the fact I had been in a mental hospital for 5 weeks, I was beating myself up… but then that small, kind compassionate voice reminded me, “you’re alive. You’ve survived. You got this.”

If you’re in recovery be kind to and nurture yourself. Remember; you’re alive. You’ve survived. You can do this.

Fun Fact: Hospital Disharge

‘Fun’ Fact: when you are discharged from hospital, they don’t expect you to leave “well” and ready to fully engage in normal life, as it was before you were unwell. They wait until you’ve made a change in direction, lasting a few days to show you’re moving toward wellness.

I was so surprised when my Psychiatrist told me that’s how it is. So, I leave the psychiatric hospital, returning home tomorrow and I am excited, thrilled and a little bit apprehensive. I’m feeling better than I was 5 weeks ago, but I am not where you may expect me to be in my recovery – I am not yet “well.” The real test will see how I am going in 6 months time.

If someone you love is being discharged from hospital, they need your love and support to adjust back into life, slowly. Realise they’ve just left a safe, regulated environment, where they didn’t have to cook, clean or work. Leaving can be scary.

So maybe offer to clean their toilet, cook a meal, do some dishes, a load of washing or bring over some groceries. Be a legend.

Remember there will be more good days than before, but don’t be surprised when their are bad ones. Remember that and be a legend.

Be patient, be kind, be empathetic, be thoughtful, be compassionate – show love and genuine care. Be a legend! It will be worth it as you see your loved one become more and more ‘themselves’ again.

So, please, be a legend and lower your expectations. They’re still ‘getting better,’ just in a different environment, at home, hopefully with lots of love.

TMS: The Treatment For Depression You Haven’t Heard Of

One million people in Australia have depression, two million have anxiety, and many have both.

Most individuals who seek treatment for depression recover. Because our brain is continually being moulded and has an incredible capacity to change, psychotherapy (talk therapy) is a proven and effective treatment. As we change our thoughts and behaviours, over time our feelings start to change too. Some people need medication to give their brain a bit of help while they go through the process. The good news is, in Australia 3/4 of those who see a GP for mental illness make a full recovery.

But for some people, like me, medications and talk therapy just aren’t enough. I’ve had depression for sixteen years, seen more counsellors/psychologists that I can count since and have been on medication for over eight years. The medication helps and a lifetime of talk therapy has meant I am high-functioning – I’m not a particularly negative person – I regularly practice mindfulness and have a plethora of strategies that I use in my everyday life… But despite all this, I still struggle with a chronically depressed mood, called dysthymia and recurrent Major Depressive Episodes, which means I go through stages of Double Depression. In a way, I thought I was destined to be depressed

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…until about nine months ago, when I heard about a treatment for chronic/medication-resistant depression called Transcranial Magnetic Stimulation (or TMS). So I started researching about this treatment that was foreign to me – what is TMS? Was I eligible to try it? How could I access the treatment? What are the side effects? How effective is it?

What is TMS?

The way I understand it, is that it is similar to ECT in the sense it uses an external source – in this case, a coil that repeatedly emits a magnetic field – to stimulate brain activity. Unlike ECT, it does not require aesthetic, cause a seizure and doesn’t have the cognitive side effects.

The magnet at the centre of the coil taps very fast on a specific point on my head – for me, it’s 40 taps in about 7 seconds, repeated 125 times on the left side. It takes 41 minutes. There will be a blue/purple spot permanently on my head while I’m undergoing my first treatment.

As it taps, the magnet stimulates the nerves in the frontal cortex, which is the part of the pain in charge of our logical thinking. The hope is to minimise the effects of depression by stimulating these nerves and increasing blood flow in that area of the brain.

Who eligible for TMS?

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TMS is for people with medication-resistant depression (yup! That’s me!) or those who are unable to take anti-depressants.

However, it’s not recommended or suitable for those diagnosed with epilepsy, have had a stroke, are pregnant or have implants that would be affected by a magnetic field, such as surgical clips, cardiac pacemakers, implanted medication pumps.

How do you access TMS?

Unfortunately, in Australia TMS does not have Medicare number (yet) and it needs to be applied consecutively for a prescribed number of days – which means you have to undergo TMS as an inpatient.

The best way to access TMS in Australia is to find a hospital that offers it as a treatment, make an appointment with a psychiatrist who has admittance rights and does TMS and ensure you have private health insurance with psychiatric hospital cover.

Although it can be inconvenient to take time off from work and/or away from home, most hospitals also offer group therapy, education, access to allied health professionals, art therapy and lifestyle advice. This holistic approach has proven effective and is a vital part of recovery for the patients who participate and take advantages of all the treatment options available while undergoing TMS.

How effective is it and what are the side effects?

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When I was looking at all my options with my psychiatrist my conclusion is this: it may work, but it is just as likely not to work – it seems like a 50/50 gamble. Statistically, it’s not as effective as ECT and there is no way of telling how a person will respond to the treatment until they try it.

However, it has far fewer risks and side effects than ECT or going through another medication change. The only side effects are tiredness and in some cases, a headache. Yep – that’s it! And it has made me very sleepy!
For me then, the only risk is a financial one, but three weeks in a hospital, undergoing group therapy and focusing on my health would be good for me, even if the TMS didn’t work. So, I have approached the treatment optimistic, but without expectation.

Unfortunately, it isn’t a permanent treatment, but I’ve been speaking to many others who have said TMS changed their lives and have been more than willing to return for their ‘top ups.’

Sooooo…

…here I am. I’ve been prescribed 20 TMS treatments, one a day and in-between number 14 and 15. Three days ago I noticed a difference – for the first time in my life, I feel like I have a choice and safe in my head.

The best way I can describe the change in my mind is;

what had always felt like a dark, dense, damp forest with a narrow path and dangerous creatures waiting behind every tree to attack,

now it feels like a spacious, open, colourful meadow on a cloudless day with the freedom to go wherever I want, without fear.

And I am only 3/4 of the way through. I still have six treatments left – Praise God!

I confess, I’m a little upset I’ll have to keep my private health insurance (it’s not cheap). However, it’s a small price to pay for a treatment that has the potential to greatly increase my quality of life.

So, I’m going to embrace this new addition to my life and continue to Praise God for His goodness and perfect plan.