REAL LIFE: My endometriosis hell - no one believed my pain

After living in agony for years Libby Schoch, 34, Darwin, NT refused to accept there was anything normal about her pain.

By As told to Take 5

Libby Schoch, 34, Darwin, NT shares her heartbreaking story doctors visits and denial:

I was sitting in class when I felt a sharp pain rip through my stomach.
Rushing to the loo, I found blood all over my undies.
I was 13 and terrified.
"It's just your first period," a teacher smiled when I told them what had happened.
Trying to imagine living with that pain for the rest of my life seemed like a nightmare.
Fretting to Mum didn't exactly comfort me. 
"I had heavy periods growing up, too, so did my sisters," she said.
But I knew there was something wrong when my twin sister, Caron, didn't suffer anything like I did when it was her time of the month.
As I got older, my periods just got heavier and more painful.
I even had to drop out of the school hockey team because there were times when it was too excruciating for me to even stand up.
Mum took me to see countless doctors, who all reassured me it was normal.
"Are you sure you're not just pretending to have a day off school?" one smirked.
I was furious people thought I was lying – this was something I wouldn't wish on my worst enemy!
As an adult, I kept searching for an answer but doctors didn't think it was anything to worry about.
Then, I discovered I was pregnant.
At 21, it came as a huge shock for both me and the guy I was seeing at time, but I'd always wanted to be a mum.
So when I miscarried at eight weeks, I was shattered.
When I miscarried at eight weeks, I was shattered
Eventually, I was diagnosed with endometriosis, a condition where the lining of the uterus grows on the outside.
It could easily lead to infertility.
"Yours has reached the bowel," a specialist confirmed.
Strange as it sounds, I felt relieved to know there was a name for my pain and that – at last – someone believed that I'd been suffering.
I had surgery to remove the growth and for the next year everything was fine.
But when the familiar stabbing returned, I was bedridden and unable to work.
"Why's it coming back?" I cried to my doctor.
But there was nothing more they could do.
Determined not to let endometriosis ruin my life, I tried for another baby.
Over the next few years I fell pregnant and miscarried four times.
"I'm starting to worry I might never become a mum," I fretted to my partner Nathan.
He wrapped me in a hug and promised that, no matter what, we'd get through this together.
I felt so lucky to have him.
Other men would have run a mile by now.
Having a child was our dream and neither of us was ready to give up.
Just as we were about to start using IVF, I found out I was pregnant again.
Weeks dragged by and I was on tenterhooks the entire time.
Passing the three-month mark was the best feeling.
Me with Nathan - he's been amazing
Sure, I wasn't out of the woods yet, but none of my other pregnancies had made it this far and I had a feeling this time would be different.
Although I suffered terrible cramps and waves of pain that felt just like endometriosis, I looked at my growing belly and reminded myself that all the agony would be worth it.
And when I gave birth to Breanna, I felt on top of the world.
"She's perfect," I breathed, looking into my her brown eyes.
She was the baby I never thought I'd have.
"And you're amazing," Nathan said, kissing me on the forehead.
Me and Nathan on the day Breanna was born
Doctors believed that pregnancy could cure endometriosis, but when my periods returned so too did the discomfort.
Six months later I started bleeding from the bowel which meant one thing: it was back.
Curled up on the couch trying not to scream, I looked at Breanna and felt tears sting my eyes.
I should have been nursing her, not writhing in torment.
I went back to the doctor but again, he said it was probably all in my head.
"Why won't anybody take me seriously?" I cried to Nathan each night.
After some research, Endometriosis Australia put me in contact with a specialist interstate.
I was so happy to be finally getting help
Nathan and I flew down to see him while Mum looked after Breanna.
We learned about a new type of surgery that could fix me.
It would cost $7000 all up – money we really didn't have, but I was at my wit's end.
We somehow scrounged together the cash.
I was devastated when the operation did nothing to relieve my symptoms.
How was I supposed to carry on?
The stress of everything meant my hair was even falling out.
Researching everything I could, I finally came across a new specialist in Melbourne who recommended having a full hysterectomy.
"But I've always wanted a big family," I told Nathan, who listened patiently and discussed the options.
"I don't want you to be in constant pain," he said.
My scars pot op
It was a big decision for someone just 33 years old, but I decided to go through with it.
Since then I've only been hospitalised twice with burst cysts on my remaining ovary, but life is so much better.
I'm finally able to go for walks and play with Breanna.
I'm happy I can fully enjoy life with my family
Through sharing my story I've connected with so many women who've had similar experiences to mine.
I've started doing talks to community groups and am determined to do all I can to raise awareness.
All up it took 11 GPs and four specialists before I finally got the treatment I needed, but I feel incredibly lucky to be a mum to Breanna.
No one should suffer alone like I did, and I'll do all I can to make sure no woman does.

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