Endo Blog

I can’t change my past but I can perhaps change someone’s future
26 Sep, 2015 | 4 mins read |
I can’t change my past but I can perhaps change someone’s future

I had a strange moment last week, a moment of clarity.

What began as a simple gesture of my support to a worthy online campaign, in a bid to get it trending, has led me to bite the bullet, and for the sake of others, tell my story.

#1in10 is a Campaign led by Endometriosis Australia in conjunction with one of their Ambassadors Mel Grieg to highlight the fact that 1 in 10 women suffer from this terrible, incurable disease, aiming to bring it into the public forum for discussion, create more awareness of it’s symptoms & the impact it has on many, & hopefully raise much needed funds to help find a cure.

Not many people are aware of this, but I am a long term Endometriosis sufferer, and my condition has worsened over the years, becoming debilitating. I was only diagnosed a year ago, as having severe Endometriosis, having suffered for what seemed like an eternity, and it’s possible I’m told that I may have had it for 10, 20 even 30 years, or possibly even since birth. In a bid to help this charity achieve their campaign goal, I took a photo with the provided download, attached the tag #1in10 and uploaded the image to their Facebook page. In a moment of naivety & tiredness, it alluded me that all of my Facebook friends would see this on their newsfeed so I was a little shocked & embarrassed when the ‘likes’ started rolling in from friends, family & work colleagues. I went into a full blown panic feeling like I may just as well have held up a placard for the world to see stating ‘I have Endometriosis’.

Some people are aware of it, but it is not something I’m comfortable with disclosing and certainly not on Facebook.

But as I digested what had happened and had a reality check, I realised that I was being completely selfish and opposing everything that the #1in10 Campaign was aiming to achieve & that my pride was essentially standing in the way of a very powerful message if I was brave enough to tell it.

If there was one thing my experience had taught me, it was that by allowing this disease to remain taboo, was to allow this cycle of ignorance to continue and by not helping to educate others, I was guilty of allowing more women to needlessly suffer. Had social media been prevalent in my younger years, with the wealth of information that is shared today, my story might be quite different. I can’t change my past but I can perhaps change someone’s future. I hope by sharing my experience, that I might be able to change at least one person’s life.

It is estimated that 176 million women worldwide suffer from this disease, which is staggering when you learn there is no cure. It doesn’t discriminate, and does not play by the rules.

Some may find it doesn’t impact their life too much, whilst others are debilitated by pain on a regular basis. I am unfortunately, the latter. It is also estimated that it takes on average 7 – 10 years for diagnosis which means so many women needlessly suffer for so long.

Many people believe the responsibility lies with the Individual to seek help if unwell, which is true, but my story, which echoes that of many others I have met, was years of a constant lack of empathy & support from Health Care Professionals who led me to believe that crippling pain, vomiting & blackouts on a regular basis were ‘normal’ and I cannot count how many doctors advised me to toughen up!

I ended up believing I was weak, & perhaps even crazy and feeling embarrassed, I stopped asking for help, instead just accepting all the pain relief that all doctors were so willing to throw at me.

I’m not telling my story for sympathy or pity, but merely to educate others, to act as a warning of the dangers of leaving this unchecked (even when pushed away by Doctors) and to urge women to demand help if they feel something is wrong. As women we become accustomed to trying to be strong & we need to be kinder to ourselves.

I never knew this condition had a name & I certainly didn’t know that it’s effects would be so devastating.

My life reached crisis point,when, approximately 1 ½ years ago, it felt like my body was gradually shutting down with every passing day & normal day to day functioning became too difficult, it was only then that my concerns were taken seriously and this was investigated.

Following 2 big operations which has stolen a huge chunk of my life over the last year, I am still healing & recovering, and some days are easier than others.

My Edometriosis was so severe it had not only infiltrated & damaged my reproductive organs but also other internal organs, permanently. Endometriosis is like a toxic weed that keeps travelling through your system, wreaking havoc wherever it takes hold, and unfortunately for me, it had the upper hand. It is possible for it to grow in all areas of the body.

Mentally & emotionally, Endometriosis has often made me feel inadequate, like I’m less of a woman, damaged & fractured & struggling to fight. The battle can take it’s toll and some days the world seems a little dimmer.

Endometriosis is not only extremely painful, and emotionally taxing but is capable of causing permanent internal damage & often infertility if left undiagnosed & untreated.

My prognosis now is that whilst I ‘should’ technically be free of the disease, the chance of recurrence for me is around 70% and there is no cure. Many women endure a lifetime of surgery.

I have more scars than Wolverine & enough Titanium holding my insides together to rival a Boeing 737. I am on a mission to reclaim my life and although I won’t win a spot at Rio, I am running, cycling, walking & swimming again most days which isn’t always easy but vital for my sanity.

Again, I don’t tell my story for pity, but for others, so that their story is different to mine.

So, whether it’s a Friend, Wife, Auntie, Niece, Cousin, Partner, or your Daughter… be aware, understand , share the knowledge, encourage them to seek help and never underestimate their suffering.

Here’s to finding a cure!


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Endometriosis Australia is a nationally accredited charity that endeavours to increase recognition of endometriosis, provide endometriosis education programs, and provide funding for endometriosis research.