Meet Our QENDO Ambassadors: Emily Jade O'Keeffe
By Emily Jade O’Keeffe
At QENDO we support anyone affected by endometriosis, adenomyosis and polycystic ovarian syndrome (PCOS). Our ambassadors are people who have been inspired by their journeys with endo, adeno or PCOS to raise awareness within their local community and beyond, supporting QENDO’s many programs and services. Emily Jade O’Keeffe is one of our amazing ambassadors, and in this blog she shares her story and journey to diagnosis.
My endometriosis story started when I was 28.
I was in a wonderful new relationship with the man I would eventually marry. I’d just started the job of a lifetime on a new radio station called Nova 106.9, scored a TV gig on Channel 9 with the Kerri-Anne Kennerly show and was writing for the Courier Mail - but I was not well.
My hair was falling out, my nails were breaking, I would sleep and sleep but was always tired, I was putting on weight yet barely eating anything, and my monthly cycle left me exhausted.
Still I pushed through with a smile on my face because I ‘should’ be happy. Finally I had everything I had ever wanted and worked for. Yet deep down I thought I was dying.
Which is exactly what I said to my Dr when I finally sat down in tears in her surgery. Armed with diseases from Dr Google I asked how long I had to live. She then banned me from Dr Google, and sent me off for tests.
The first diagnosis was that my thyroid was barely hanging on. I had Hashimoto's disease, an autoimmune disorder in which your immune system creates antibodies that damage your thyroid gland, your thyroid gland pretty much runs your entire hormone system.
Without it you do actually die. SO I was kind of right.
I still asked if I could heal it naturally, like I was some sort of hippy, thinking the root of some Himalayan tree blessed by chanting monks drunk in a tea might help me.
My Dr told me I would probably get a goitre if I didn’t take the proper medication. Thick necks only belong on the football field, so medication it was and within weeks I was feeling better.
The next appointment was with a gynaecologist. At that stage, besides my 2 yearly pap smear, (which I’d only had 2 of) I’d never had anyone peer up, talk about or address anything to do with my vagina (relationships excluded of course).
If I could warn my 28 year old self that that was just the start of over a decade of a million total strangers poking around up there and not even buying me a drink, I would.
I made the appointment and turned up to a reception plastered with pictures of happy fat babies. The irony of that was lost on me until years later. I was told it could be Endometriosis and the only way to discover the cause of my pain and discomfort is keyhole surgery. A month later, after my surgery, it was confirmed I had endometriosis. I’m told there is no cure and I’m given a pamphlet with a picture of a bird on the front. Still to this day I wonder why they picked a bird? Do birds have painful periods too?
Fast-forward 4 years. I am 32, happily married and now trying for a baby. After 12 months of normal boom chicka wow wow 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 cause infertility? No, I didn’t. With only a pamphlet with a bird on her period to turn to for advice I didn’t realise. So my GP gave me a referral to a fertility clinic and my decade long challenge to create my family began.
But I am one of the lucky ones.
After some assistance my daughter Millie Valentine was conceived 2 years later and born the day before my 35th birthday and then 6 years later and after a miscarriage with the help of naturopaths, diets, vitamins, copious amounts of dirt juice, medications, 5 operations, 3 rounds of IVF, 32 embryo’s, a miscarriage and a miracle potion made out of poppy seed oil called Lipodol shot into my tubes, Teddy was conceived.
I’d love to say it was a happy pregnancy, but sadly at 20 weeks I was diagnosed with an incompetent cervix, which is basically the baby plug and a very unflattering condition, I’m very competent, and I didn’t like that a part of me was letting my competent game down. It can be common for sufferers of endo or a geriatric pregnancy. Yep that is the other complimentary term they use for a pregnancy over 40, my womb basically needed to be dyed purple and booked into a retirement village to play bingo. I needed emergency surgery of a big stitch in my cervix to save Teddys life. Or as my girlfriend said, my geriatric womb had a facelift. Which is so GC.
Then I was then on complete bedrest for the next 10 weeks of the pregnancy. The only walking I could do was for my “toilet privileges” which is what they called going to the toot. I never thought going to the loo was a privilege and not just a plain old human right. I was so scared to go to the loo though, I thought Teddy would just fall right out knowing my luck, I was even afraid to fart… oops baby! I also couldn’t hold on because that put pressure on my cervix and caused pain. I would panic because I would feel that pain and think I was going into labour and then realise… no just a fart. Gerard thinks that should be the title of my book…”Is that labour, no just a fart”
But after my champion lying down ability Teddy was born safely and naturally. Nearly full term and after a tiring marathon of a one our labour…… the only time my old womb and useless cervix came in handy, I nearly did fart and have a baby.
If someone told me licking elephant poo might help me have kids, I would have tried it because I believe you just have to try everything in order to sleep at night. I didn’t want to go to my grave knowing there was one other method we could have tried. 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 my hubby and I felt very alone.
No one loves to talk about their lady part problems public. There is no BBQ banter of ‘hey what's up with your womb?’ but I have to say with the confidence of other women slowly putting their hands up online, with platforms like social media and groups like Qendo saying ‘I have that too’ the conversation is much more accepted in 2019.
I sometimes feel like the club house leader in my community for infertility and while I’d rather be the club house leader of the Chris Hemsworth appreciation society, I am proud that sharing my story, that sharing my kids helps other women feel less alone and inspired to keep trying.
So welcome to our club ladies, we are not alone.
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