I want to be more than ‘Emma with endometriosis’
Your experience of endometriosisShare your stories, photos and videos.
Living with an invisible illness
It's 2am and after seven hours of tears and groaning in the Emergency Department the doctors have decided I'm not a druggie trying to get my fix, and charted some morphine to ease the pain.
I get it, I'm an 18-year-old girl. But I've got far better things I could be doing on a Saturday. Although it wouldn't be drinking - that just causes pain and discomfort, too.
This isn’t the type of pain where you can take a Panadol and have a lie down. It’s the type of pain that knocks you off your feet, leaves you lying on the bathroom floor alternating between hot flushes and cold sweats. The type of pain where you don’t even want to be alive.
With every hospital trip, I had to fight to communicate just how bad the pain was, while proving I wasn’t an attention-seeking hypochondriac.
I visited doctor after doctor, remaining hopeful that the next specialist might be able to help. Every test came back saying I was perfectly healthy – so I was sent on my way.
I started to accept that this would be my life.
Fast-track six years of getting nowhere and I finally saw a gynaecologist who suspected endometriosis, though I was told I’d need an operation to confirm diagnosis.
Great, I thought. I know what it is, it’s been removed, and now my life will be 100 times better; I can get on with being a normal teenage girl.
Wrong. This was just the beginning.
Bring on the inability to exercise from pain, the postoperative depression, the struggle to find a treatment that worked, the headaches, imbalance in hormones, the still-painful sex, the weight gain, the reliance on morphine-based painkillers. Then my bowel stopped working because I’d become a toxic mess, poisoned with drugs.
When it came to meeting guys, I became “Emma with endometriosis”. I felt like I might as well have a Tinder profile that read “disease sufferer, likely to always have something going on and unable to have children naturally”.
Yes, I look completely normal on the outside. But I very rarely go a day without some sort of pain or discomfort. There’s never a day where I’m carefree.
I feel like I’m defined by this disease - but I didn’t wake up one day and decide that it would be a fun way to live my life. I don’t enjoy having to critically plan everything that I eat and do.
I spend all of my time thinking about what I should or shouldn’t be doing to improve my life and chances at having children – because the thought of not being able to crosses my mind every day. I’ve become willing to try anything: acupuncture, colonics, Chinese herbs, bone broth, Riki, vegetarianism. It’s reached the point where I’m seen as an alternative hippy.
I’m constantly beating myself up and hating my body because it can’t do the things a woman’s body was made to do.
I feel like I’m not only a burden on myself, but on others. I need money: money to see a specialist physio to strengthen my pelvic floor muscles so I don't pee during exercise; money to talk to a psychologist and overcome the eating disorder I developed as a result of my bad relationship with food; money to pay for the fertility treatment that isn't funded by health insurance.
It’s not just financial support I need, but emotional support. Constant reminders that it is going to be okay, that life isn’t that bad and that one day I will get IVF and have the family I've always dreamed of.
I get it, I'm not dying. I have an incredible life: a husband who loves me for the person I am, an amazing job, a support network made up of brilliant friends and family members.
But that doesn't mean endometriosis is easy to live with or well-understood. It's one of the most common diseases, yet the majority of people have never even heard of it.
I used to be scared to talk about it. I thought it was going to stop me from getting a job, lead to judgment and being treated differently.
I didn't want sympathy or constant reminders that I wasn't "normal." But living in my own little bubble of self-pity didn't help either, so in 2014 I started a blog called Embracing It, which is based on the concept that sometimes the things we can't change end up changing us.
I don't want endometriosis to be a taboo topic. I want to help people understand the frustration and emotional rollercoaster ride that comes with it. I want women to stop apologising for something they have no control over. I want people to see how common it is. If you think about 10 women you know - your mother, daughter, sister, friends - statistically one of them will live with this disease that no one knows the cause of or cure for. Isn’t that crazy?
So although it's been an absolute b...., endometriosis has made me the resilient and driven 25-year-old I am today. And the reality is, I have no choice other than to deal with it and make the best of my situation. If you have similar symptoms or know someone who does – please, please fight for answers, and let’s change the average diagnosis time of eight to 11 years.
Do you struggle with endometriosis? Click the green button to share your story or email firstname.lastname@example.org.
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