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Told my endometriosis was 'all in my head’

Now, Grace is going through menopause at 21 - by Sarah Firth
  • 09 Oct 2017
Told my endometriosis was 'all in my head’
Supplied

Grace Corcoran, from Melbourne, suffers horrendous pain due to a debilitating condition called endometriosis.

But she fought for years for a diagnosis after doctors told her the symptoms were all in her head.

Now, at 21, she is going through the menopause.

Here, she shares her story with that's life!

As the steam hit my face, the heat was unbearable. Being a barista, I made heaps of coffees every day. This time though, I could feel my face flushing bright red as I burned up.

Stepping back, my eyes filled with tears. But it wasn’t just the machine making me overheat. I was having a hot flush. That’s because, at just 21, I’m going through the menopause.

When I first got my period in year six, I was plunged into a world of pain.

Cuddling a hot water bottle to ease awful cramps, I had horrible back pains, too. It also hurt when I ovulated. It was so bad I missed school.

‘Is this what happens to grown-ups?’ I asked my mum, Anja, 52. She’d suffered bad cramps, too, but nothing like this.

Grace Corcoran suffers from endometriosis

I smile, but I'm in pain every day

Supplied

Then, the next year, I came home from school in horrific pain. I lay on the lounge groaning and when Mum came home from work, she rushed me to hospital. Doctors thought I had appendicitis.

But after my appendix was removed, it turned out to be completely healthy.

‘They aren’t sure what was wrong,’ Mum told me. From then on, my teenage years were filled with tests.

Seeing more than 60 doctors, who struggled to pinpoint what was wrong, I was diagnosed with irritable bowel syndrome, and had two more operations to look for intestinal problems.

‘It’s like someone is twisting a knife inside me,’ I explained, tearfully. ‘And trying to pull my insides out.’

I was always tired, too. Why don’t I try the pill? I thought, when I was 16. I’d heard it could help ease PMS symptoms. It gave me some relief, but I was still in pain. By the time I went to university, hoping to become a doctor, I was falling behind in my studies.

Depressed about my future, I longed for answers.

Grace Corcoran in hospital being treated for endometriosis pain

I'm often in hospital and my stomach has been burnt by hot water bottles

Supplied

"If this had been caught sooner, I’d have been spared so much misery."

Grace Corcoran

By 2015, I couldn’t move for excruciating pains across my stomach and pelvis. I even burned my stomach with hot water bottles, desperately trying to soothe the pain. I also had difficulties emptying my bladder.

‘This is a living hell,’ I sobbed to Mum. Heartbroken, I left university and also gave up my part-time job. Despite being in and out of hospital for pain relief, I was told it was all in my head.

Scared I was losing my mind, I saw a psychologist.‘You’re not imagining this,’ she reassured me.

Finally, in June 2015, I was given a laparoscopy, where a tiny camera is used to check reproductive organs. They found tissue was attached to my womb, ovaries and bladder.

‘You have endometriosis,’ the specialist explained. The condition, which causes tissue to grow outside the uterus, affects up to 10 per cent of women.

Symptoms can vary and some people are affected more severely than others. On top of that, I was also suffering from Fowler’s syndrome, which meant I couldn’t relax my bladder muscles. To relieve this, I had to learn how to insert my own catheter.

And, I had vaginismus, too. That’s where the vaginal muscles tense up, causing intense pain.

Grace Corcoran in hospital being treated while her friend Lily visits

My friend Lily has been so supportive

Supplied

I was relieved to have a diagnosis, but angry at how long it had taken. If this had been caught sooner, I’d have been spared so much misery, I realised, feeling robbed of my adolescence.

Instead, I had no degree, no job and could barely leave the house. At least Mum, my dad, Kevin, 56, siblings Jack, 18, Claire, 16, Michael, 14, and best friend, Lily, 21, have all been amazingly supportive.

As well as having the tissue removed, I was told hormone therapy could help. The catch was it would put my body into early menopause. If my endometriosis hasn’t affected my fertility, I would love to have a big family some day.

So I was pleased to be told the menopause was only temporary. However I would suffer the hot flushes, sweats and mood swings women usually face decades later. ‘I don’t have a choice,’ I told the doctor. ‘I can’t go on like this.’

So, now I take a cocktail of pills daily, but I can work part time in the cafe and I’ve started studying again.

Even so, I’m still in pain and often feel isolated because it’s hard for people without endometriosis to fully understand what I’m going through.

That’s why I’ve vowed to raise awareness about this devastating condition.

I set up my Instagram page, @fight_endo_like_a_girl, to reach as many women as possible. And I'm ready to host my first educational and empowerment event for those affected by endometriosis in Melbourne in November.

I’ve also set up a petition calling for better funding. I'm convinced that, with more research into endometriosis, it can be diagnosed earlier and even cured. Until then, I’m determined to spread the word and make sure no other women have to suffer in silence.

fight_endo_like_a_girl View Profile
51 likes - View Post on Instagram
MY MELBOURNE ENDOSISTERS We would like to invite you to attend the first ever education and empowerment afternoon focused on endometriosis, "sparkle for our sisters". My name is Gracie and I'm the activist behind the "fight endo like a girl" Instagram account. I've partnered up with a local bar in Melbourne "The Nevermind" to host the first ever "Sparkle for our Sisters" event, aimed at education, awareness, and raising money for those fighting endometriosis. The afternoon will be one of education and empowerment, with guest speakers discussing their experiences of endometriosis, and how the wider community can help. This will also be an opportunity to meet other women in Victoria who suffer from pelvic pain and endometriosis or to support those suffering. We will also be collecting donations for #QENDO. We would truly appreciate it if you can spread the word about this event, so that all endosisters that can attend will be able to. What will be happening: "Sparkle for our Sisters": Come dress in your most sparkly outfit to raise awareness about endometriosis. I look forward to seeing you there!

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