Why I am ending the silence on endo

I acknowledge the traditional owners of the land on which we meet and pay my respects to the elders past and present.

Thank you to Syl Freedman and EndoActive for inviting me today and Endometriosis Australia for making me an Ambassador.

My connection with endometriosis began when I was in my early 20s, about 30 years ago, when one of my best friends from high school was diagnosed with this insidious disease. 

While my girlfriends and I studied at university, danced our weekends away, planned bold and exciting careers and scrimped and saved to travel overseas, Jill was married, paying off a mortgage in a house in the suburb next to where we grew up and trying desperately to get pregnant.

Jill was diagnosed with endometriosis in her teens. She married young. He was an unlikely match. He was a bad match. We knew, in our heart of hearts, that her decision to marry was driven by endometriosis. That the excruciating period pain, endless treatments and fear of infertility had disempowered her, leaving her out of control of her life, boxed into a corner.

After about two years of trying to get pregnant, her son was born. But the marriage was doomed and ended badly. Jill took her little boy, moved to the other side of town and spent the next 10 years doing it tough as a single mother. Living in shared houses. Juggling the needs of a young son with part-time work. Eking out an existence from week to week for a decade of her life.

Jill's endometriosis, and the decisions she made because of it, led her to a life of struggle and hardship. Had she not had endo, I don't think she would have married that man. I don't think she would have had a variety of jobs, but no career. I don't think she would have had to fight until her 40s for her self-esteem and self-confidence.

In March this year, I shared Jill's experience at an Endo March high tea, to an audience of about 100 Canberrans. 

I then spoke about the event in what is a called a 90 second statement in Parliament.

I make a 90 second statement almost every day we sit and then post the speech on my Facebook page. It's usually about an issue I am campaigning on or an event I've attended or it's singing the praises of Canberrans and Canberra. And usually each post gets a number of shares, a couple of hundred views and about ten comments.

Nothing prepared me for the response I received to that first speech on endometriosis in March.

As soon as it was posted, the views went up by the hundreds into the thousands in minutes. Comments flowed in from across the country and overseas. 

The reaction was so sudden, so unexpected and so huge that the Huffington Post got in touch with me to write an op ed.

I was overwhelmed, shocked, by the response from Australia, from New Zealand, from Canada, from Brazil. 

I heard from hundreds of women, mothers and fathers who bravely shared their heartbreaking stories - stories that seemed to be unleashed for the first time. 

The misdiagnosis. The myths. The operations. The hysterectomies. The endless operations. The lost opportunities. The cost. And the pain, the dreadful pain. The daily struggle to take control of their lives.

From Samantha:

"It nearly killed me twice in a matter of months and my entire life has changed because of it... I have had 10 laparoscopic surgeries, one perforated bowel. Another three corrective surgeries... A lot of scars, 18 months of hell and what will probably be a lifetime of pain."

From Jenna:

"Now at 29 I have had to have a hysterectomy... The amount of money that has been lost so that I can do day-to-day things is astounding." 

From Michelle:

"How about not being diagnosed until you are 53, and then it's not just endometriosis but it's grade four. And in my thirties being told by a male doctor to go home and have vigorous sex to burst a possible ovarian cyst!... I am a mess... and will be needing a partial bowel resection, along with the hysterectomy."

 From Ange:

"Endo robbed me for 20 years... I am 35 years old and have recently undergone my 15th surgery... this time I sacrificed my womb in order to live a pain-free life..."

 From Caitlin:

"I was told I was imagining my symptoms, lost my dream career and am struggling to complete my new degree and start my life over again."

Since that first speech, I've shared many stories like these in Parliament on a fortnightly, and now weekly basis. 

I've shared these stories because I've been confronted and deeply moved by the tragedy of this disease.

I've been confronted by the horror experienced by women with beautiful young bodies when they see the scars from their first operation for the first time.

I've been confronted by normally fit women with enormous potential being dubbed the "sick person" in the office. 

I've been confronted by the erosion in self-confidence and self-esteem that comes from a life of pain, uncertainty, fear, interventions and not being taken seriously. 

I've been confronted by the amount of radical operations inflicted on women, often at a very young age. 

I've been confronted by the lack of understanding and discrimination that exists in the workplace.

I've been confronted by the lack of intimacy in relationships because sex lives are ruined by pain and endless bleeding.

I've been confronted by the financial burden, when women should be saving for first cars, new furniture for their rental, a deposit on a home, a trip overseas with their families, a holiday at the coast.

I've been confronted and deeply moved by the fact that so many women feel so, so alone and so, so frightened. Voiceless. Powerless.

I've been confronted and deeply moved by the courage of these women and their family and friends to share their experiences. 

And I've been confronted by the ignorance that this affects one in ten women.

Which is why I will speak again, and again, and again on this issue.

A few months ago, Nicolle Flint and I paired up to establish the bipartisan Parliamentary Friends of Endometriosis after she heard one of my speeches in the chamber.

Together we are working with you to work out what you want from public policy makers, so we can take that platform to the Minister for Health and the Shadow Minister for Health at our first official event in Parliament House later this year.

Together we are working with you to achieve change. 

Together we are working with you to show you are not alone.

Together we are working with you to end the silence about endometriosis.

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