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Living with Endometriosis

Vanessa de Largie | Dec 29, 2020

I was diagnosed with Endometriosis at 16, which means I’ve been living with the condition for twenty-seven years.

I’m here to tell you that in nearly three decades, nothing has changed. 

Endometriosis experts still claim that little is known about the disorder.

For those of you who have no idea what Endometriosis is… 

It’s a condition where tissue that normally lines the uterus grows elsewhere in the body.  It can be found on the bowel wall, the intestines, the fallopian tubes and the ovaries.  It has even been found in the eyes and the spine.

For the 5-7 days I menstruate every month, I am in severe pain.  

On a one-to-ten pain threshold.  One being the least painful and ten being excruciatingly painful.  It usually falls somewhere between a seven and a nine.

How do I cope? 

I probably go through three or four packs of ibuprofen.  I use a heatbag for my tummy and a hot water bottle for my lower back.  Alcohol also helps.

I’m on the second day of my period as we speak. The pain I’ve endured today is the reason I am writing this tonight.

Often during my cycle, I downplay what women with Endometriosis go through.  But more than that, when you live in pain every month — this becomes your normal.

Since I arrived in Melbourne at 22, I have used my writing and acting to try and create awareness about this condition.

Aged 24, I wrote a play called ‘If A Bloke Had Endo’.  It was performed by myself and another Australian actor at the Box Hill Hospital in front of patients, doctors, international experts and politicians.  It’s probably one of my bigger accomplishments to date.

After that performance, I was invited to be on the committee of the Endometriosis Association. I didn’t even know what that meant but it sure sounded fancy.   

I had to decline because I had to return to Perth and my caring duties of Mum.

The CURRENT endometriosis association isn’t the original.  The original (which I was a huge part of) was forced to close down due to a lack of funding after twenty years of spreading awareness.

I went on to write some pieces for a medical journal called ‘Endo Issues’ at the Royal Women’s Hospital and I was also invited to write a piece about Endometriosis for The Huff Post  — which is still online.

The whole point of the play I wrote is if a bloke had endo, this medical puzzle would be solved.  

Can you imagine men having painful penis issues EVERY month year in year out? 

They wouldn’t fucking put up with it.  There would be advertising campaigns and massive support by the government.

I never pull out the ‘gender card’ — NEVER!!!  But I’m going to here.  

Because we are women, it’s dismissed as that ‘period stuff’ or ‘women’s problems’. 

No woman should have to live in severe pain every month of her fucking life yet an estimated 10% of all women suffer from Endometriosis.

And don’t tell me there are solutions.  I’ve tried them all.

  • I’ve had numerous laparoscopies and I’m due for another one soon!
  • I’ve tried the ghastly Danazol  (never again!)
  • Natural therapies and it goes on and on

Nothing helps.   Nothing has changed for me in 27 years.  And I’ve been fucking active in trying to find a solution.

A full term pregnancy may solve my problems, my gyno tells me.  Well, that may be on the cards in the next five years.   But dealing with Endo and a screaming newborn would be hell on earth.  Let me tell you!!

I wanted to read Australian poet, playwright and novelist, Dorothy Hewitt’s book ‘Wild Card’ because we went to the same ‘all girls school’ in Perth and have similar perspectives about life.

What I didn’t bargain for when purchasing the book, was finding out that she also suffered from Endometriosis and blamed her alcoholism partly on it.  Hewitt used gin and heavy pain medication to numb the monthly pain.  I know what that’s like!

I don’t have the time or inclination to create awareness about Endometriosis anymore.  Someone else can do it.  

I don’t have the passion for it.  My passion is aged care.  That’s where my energy over the next 5 years must go.

But I hope some kickass woman comes along in Australia and gets things moving.  Because otherwise there will be no relief for any of us.