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I'm Sharing My Struggle With Endometriosis To Help Give A Voice To This Silent Disease

For a disease that is found in one out of 10 women, I'm shocked that it's still such an unknown topic.

17/07/2017 11:27 AM AEST | Updated 17/07/2017 3:29 PM AEST
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"For girls suffering -- go and see your doctor if you haven't already; especially young women who can get on top of this early."

I'm writing this blog with the intention of raising and spreading awareness of a silent disease in women: Endometriosis.

My objective is to share my personal story, my struggle with the disease, in the hopes that other women who suffer from Endometriosis will relate -- and to educate both men and women without the disease, on the life-altering effects it has on many women around the world, even the women around you.

For a disease that is found in one out of 10 women, I'm shocked that it's still such an unknown topic.

Endometriosis is a condition in women where endometrial tissue is found outside the uterus. It is trapped in the pelvic area and lower abdomen and, in rare cases such as mine, in other areas of the body too.

The most common symptoms include severe pain before, during and/or after menstruation. I'd just like to point out that most women have pain with their periods, but can usually find relief from over-the-counter pain meds, a heat pack at worst.

An indication of endo is when the pain is debilitating at any point in your cycle. If the pain lasts for more than two days and keeps you from your regular daily routine, I'd recommend speaking with your doctor.

So, let's start at the beginning of my story...

This is quite shocking to people. This is me. This is endometriosis. I never intended to share these photos hence why I'm naked, but my god I can't believe the amount of DM's I've received from girls who have endo too and feel alone. The left is my stomach 3 weeks after a ruptured cyst (5 weeks ago). The right is me now, on a drug called "synarel" that has stopped all my hormones and sent me into menopause at the age of 27. My upcoming trip to Greece along with this drug is in hopes to get me prepped and in the best condition both physically and mentally for an operation I'm receiving in late August. Endo is no joke. I'll be operated on for 7+ hours and hospitalised for a week. Please, spread the word about endo. And If you know anyone with bad period pain PLEASE tell them to get checked for this. And to my girls with endo.. you're not alone ❤️

A post shared by Thessy Kouzoukas (@thessy.k) on

When I first got my period as a young teenager, I got labelled 'lazy' when I couldn't participate in certain sports at school, or 'drama queen' when I would take days off school because I was doubled over in the shower trying desperately to find relief from abdominal pain.

You're told to expect that you'll get your period and, that you might experience period pain -- but we aren't told how much pain should be considered tolerable, or when too much pain could be an indication of something worse, like Endometriosis.

Why didn't they tell us that debilitating pain isn't normal? If I had known this 14 years ago when I started to get my period, I could be in a much better position in terms of controlling the disease, and its effects on my fertility.

I was quickly put on the pill -- which I've since learnt is the best way to minimise the growth and effects of endo. And, my endo was kept at bay for 10 years or so.

Fast forward a decade -- the pain was back with full force, and I had to start taking time off work. I decided I'd had enough of these period pain-like killer cramps (which I thought were normal) that I was experiencing every day, even when I wasn't on my period. I got myself to a specialist who sent me for a scan to check for cysts.

Shock horror -- I had a nine cm cyst inside my right ovary, which needed immediate attention as they were unaware of the nature of the cyst. I was required to get a laparoscopy the next day -- to inspect and remove the cyst and to check for any signs of endometriosis.

Thankfully, the cyst was an endometrium and nothing more sinister. "You have very bad endometriosis" are the words I remember as I woke up from surgery. Endometriosis? What is that? I had a million questions! I had never heard of anyone having endometriosis, but to be honest, I was quite relieved that I could finally get some answers.

Living with endo for the past four years, since I found out what I'm dealing with, has been challenging. The past few months in particular. My disease has progressed, and I've developed two new, large cysts, one in each ovary. I was referred from an endo specialist to a fertility specialist, as there is a big-grey cloud around the link between infertility and endometriosis.

I was recommended to attempt preserving my eggs with IVF before getting surgery to remove the cysts, as my ovaries may be compromised in the removal of the cysts.

IVF is the process of fertilization by extracting eggs, retrieving a sperm sample, and then manually combining the egg and sperm in a laboratory dish. Sounds simple, right? Wrong. Injecting myself with hormones that promote the growth of my ovaries means one thing -- my ovaries will be stimulated, which means my cysts will be aggravated.

We took a gamble and went for it. Two days in and I was rushed to hospital with a ruptured cyst for the second time in two months. I was devastated. A ruptured cyst requires bed rest for at least seven days -- no exercising, no working, and no socialising.

I'd had enough.

My fertility specialist referred me back to my endo specialist. A new plan has been put in place, which I'm currently implementing. I was administered a drug to decrease the performance of hormones, which in turn will reduce symptoms of endometriosis.

By doing this, I can get surgery in eight weeks and hopefully the damage caused by my endometriosis can be minimised. Hopefully my ovaries can be preserved.

What a scary thought -- to think that my ovaries are at risk! I've been advised that the surgery will be quite extensive -- I'll have my endometriosis removed, my cysts removed, and my organ adhesions unstuck, which are all common procedures for severe disease.

For girls suffering -- go and see your doctor if you haven't already; especially young women who can get on top of this early. Don't be shy or ashamed to talk about endo. Be good to your body -- eating healthy and exercising daily is SO important.

This is easier said than done. Trust me, I know! But if you push past your pain barriers, sometimes great things can happen.

Don't let endo control your life.

Don't think you'll never fall pregnant even though that's what they tell us. There have been so many women with bad endo who have fallen pregnant, focus on that thought. It's all about positivity, a balanced lifestyle and a great support network.

Create awareness as much as you can. And remember, your life isn't over, you're just living with endo. Things could be worse. Count your blessings.

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