My Journey with Endometriosis and Infertility

By Emily-Jade O'Keefe, QENDO Endometriosis Association (QLD) Inc

Finally I have everything I have ever wanted and worked for and yet deep down I think I am dying. Which is exactly what I say to my Dr when I sit down in tears in her surgery. Riddled with anxiety and armed with diseases from Dr Google I tell her my symptoms and in no time she has told me I’m not dying, banned me from Dr Google, and sent me off for tests promising we will get to the bottom of things.

The next step is an appointment with a gynaecologist. At that stage, besides my 2 yearly pap smear I’ve never had anyone peer up, talk about or address anything to do with my vagina (relationships excluded of course). I’m uncomfortable, but I’m also uncomfortable in my body. So I suck it up, make an appointment and turn up to a reception plastered with pictures of happy fat babies. It seems so weird that I’m so far from that headspace, and yet the only place able to investigate my issues is a gyno/obstetrician. It escalates quickly when I am told it could be Endometrosis and the only way to discover the cause of my pain and discomfort is keyhole surgery.

A month later, after my surgery, it is confirmed I have endometriosis. I’m told there is no cure and that I might have to have surgery every few years to keep on top of it and a pain management plan. That’s it. I’m not offered a support group, more information on its symptoms, and certainly no mention of infertility.

Fast-forward 4 years. I am 32, happily married and now trying for a baby.

Trying being the key word.

After 12 months of normal trying I book in to see my GP again who is shocked that I took so long to come to her. Didn’t I know that Endometriosis can lead to infertility? No, I didn’t. I felt so very very stupid. I was never told verbally once. Devastated and feeling foolish my GP gives me a referral to a fertility clinic and so my decade long challenge to create my family begins.

But I am one of the lucky ones.

My daughter Millie was finally conceived 2 years later and born the day before my 35th birthday and now I am waiting finally for the birth of our 2nd child 6 years later. To count the methods and trials to get my two children is exhausting. From naturopaths, to diets and vitamins, copious amounts of dirt juice and medications, 5 operations, 3 rounds of IVF, 32 embryo’s and a miscarriage- my husband and I tried everything and spent a small fortune. We had ups and downs, times of elation and deep despair, we quit, we started again, we listened to all the advice from experts and people ‘who knew someone who knew someone just like us’ with the same problem again and again and again. I wouldn’t wish it on anyone and for a long time we felt very alone.

But quietly change was happening, that change was social media. No one loves to talk about their lady parts problems public. There is no BBQ banter ‘hey whats up with your womb?’ but with the confidence of other women slowly putting their hands up online saying ‘I have that too’ shared education and support began.

No more flimsy pamphlets with birds on the front. Real women, with real faces and real organisations starting popping up and before I knew it support lines, support groups and factual, helpful information was available at the tap of a finger. It was both comforting and concerning as the stats began to truly reveal themselves. One in 10 women are suffering from endometriosis in this country. Fertility clinics are full of clients with it, schools full of young girls being told the pain is just what happens to women and a whole generation of women missed out on being mothers because of the mystery it.

That’s why organisations like QENDO and are so important to support for women like me.

They are a voice to Government to find funds for research for a cause and cure, they provide support for women and girls recently diagnosed with it and they educate the rest of the community so that there is more compassionate understanding of the complications of it.

I am proud to have been asked to be an ambassador and although I would love to not have endometriosis and perhaps be an ambassador for the Chris Hemsworth appreciation society,

This disease picked me and I’ll do my best to ensure one day it doesn’t pick my daughter and granddaughters and one day we can all be endo free. People still have not heard of endometriosis and therefore many women suffer alone and in silence.

QENDO offers support via many means of communication. A group of volunteers with endometriosis experience assist women affected by the illness.

We work to educate and raise awareness throughout the wider community via social events, information sessions, school programs and endometriosis network groups to assist women of the future.

N.B.: We are happy to add that since writing this article, Emily has given birth to a beautiful, healthy baby boy Teddy James. Born June 11 2018. A gorgeous little brother for big sister Millie. We congratulate and wish the family all the best.

 

Note: The views and advice expressed on this blog post are those of the author and are not representative of the Pregnancy Babies & Children's Expo.

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