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We Must End The Silence About Endometriosis

The misdiagnosis. The myths. The operations. The hysterectomies. The lost opportunities. The cost. And the pain, the dreadful pain.

03/04/2017 11:28 AM AEST | Updated 03/04/2017 11:46 AM AEST

In our early twenties, my girlfriends and I were the quintessential '80s women. Big hair. Big shoulder pads. Big earrings. Big lust for life -- albeit little budget to match it. We studied at university, danced our weekends away, planned bold and exciting careers and scrimped and saved to travel overseas.

At the same time, one of our best friends from high school was married, paying off a mortgage in a house in the suburb next to where we grew up and trying desperately to get pregnant.

Jennifer* 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 Jennifer's decision to marry was driven by endometriosis. That the excruciating period pain, endless treatments and fear of infertility had disempowered Jennifer, leaving her out of control of her life, boxed into a corner.

It nearly killed me twice in a matter of months and my entire life has changed because of it...Samantha

After about two years of trying to get pregnant, her son was born. But the marriage was doomed and ended badly. Jennifer 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.

Last week I spoke in Parliament about the one in 10 women, like my friend Jennifer, who have endometriosis. And I was overwhelmed, shocked, by the response from all over Australia and around the world. I heard from hundreds of women, mothers and fathers who bravely shared their heartbreaking stories.

The misdiagnosis. The myths. The operations. The hysterectomies. 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."

Endometriosis occurs when the tissue that is similar to the lining of the womb grows outside it, in other parts of the body.

This insidious disease costs the health, the careers, the futures, the fertility, the sex lives, the hopes and the dreams of 10 percent of women in our community.

Symptoms are variable, which contributes to a seven to 10-year delay in diagnosis. Common symptoms include excruciating pelvic pain around or during a period. It can damage fertility.

While endometriosis most often affects the reproductive organs, it is frequently found in the bowel and bladder. It has also been found in muscle and joints and the lungs and brain.

According to University of Sydney research, endometriosis costs our nation $7.7 billion each year. About two thirds of this is in lost productivity and the rest is in direct healthcare costs. But what's worse is this insidious disease costs the health, the careers, the futures, the fertility, the sex lives, the hopes and the dreams of 10 percent of women in our community.

We have to break the taboo about this "unknown women's condition" that "knows no boundaries and shows no mercy".

We have to end the silence about endometriosis.

*Name has been changed.

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Throughout 2017, The Huffington Post Australia is running a series called No Two Women. The series will cover everything women, and men, need to know about what women deal with thanks to their hormones.

We want to hear about your experiences, and about what you want to read. Let us know by emailing notwowomen@huffingtonpost.com.au or contribute a blog post by emailing blogteam@huffingtonpost.com.au


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