Think back to the worst period pain you’ve ever endured… now imagine if that period pain was something that tortured you all month long and couldn’t be relieved with chocolate, a hot water bottle or even the strongest painkillers? It’s a thought few of us could comprehend, but it’s a reality for the 10% of Australian women who are living with Endometriosis, and Thessy Kouzoukas is one of them. The 27-year-old Creative Director of online retailer Sabo Skirt reluctantly but extremely bravely shared a before and after image, that shed some light on the reality of living with this debilitating disease, in the hope it would help raise awareness about the condition.
When and how old were you when were you first diagnosed with endometriosis?
I was first diagnosed with endometriosis in October 2014, I was 23 years old.
When was the first time you realized something was really wrong?
Throughout my young teenage years I had immense pain when I got my period, but I thought this was normal. I was put on the pill and my symptoms became dormant – 10 years later (4 years ago) I came off the pill and knew straight away something was wrong. I would faint and vomit from period pain, even at times when I didn’t have my period.
What were your symptoms and how long did you struggle with it before you received a diagnosis?
I struggled with period pain since I first got my period at 13 years old. As mentioned coming off the pill unmasked my symptoms such as crippling period pain that would have me doubled over for 2 days at least, constant aches and throbs in my lower abdomen and extreme bloating. It was only 3 months after I came off the pill that I got myself to a specialist.
How have you managed and treated it until now?
I have undergone a laparoscopy where I had my first 9cm cyst removed and my endometriosis cleaned up. While they were investigating, they found that between my organs are riddled with endometriosis also. This means my organs are stuck together and need to be carefully separated which is what I’m having done in late August.
Have you ever spoken publicly about your endometriosis before?
I have not hidden the fact that I have endometriosis, but I’ve never shown anyone in the public such personal photos and the extent of my disease. I always mention my disease in my fitness style posts, but have not gone into great detail until now.
What made you decide to post the before and after photo that went viral?
I had posted a photo of my fitness update (I’m currently doing the Fitaz 28 day fitness program) and let my followers know how I was coping with my endometriosis. In the post I shared that I am on a drug that will help minimise my disease but in turn has sent me into menopause. I woke up the next morning with SO many direct messages from girls who are experiencing something similar, or feel alone, and other girls messaged me to thank me for talking about endo publicly. I thought to myself, I can make a difference here! I know the photos I posted are quite a shock to people, But I thought if people could visually see the effects of the disease then maybe endometriosis will be taken more seriously. I decided to post the side by side photos to show that someone who appears to have a carefree life can be suffering, that endometriosis is a very real disease and should be taken seriously and I also hoped that it would help girls suffering know thatthey’re not alone.
Can you describe the left and the right and how long apart those pictures were taken?
I took the left photo around 5 weeks ago. The left photo was 3 weeks after one of my 2nd endometrioma cysts ruptured. An endometrioma is an ovarian cystic mass caused by endometriosis – they’re also known as “chocolate cysts” because they look like they’re filled with dark chocolate which is in fact toxic blood and fluid. The toxic fluid from my cyst had ruptured and spilled into my pelvis and throughout my uterus, bladder and bowel. I’ve since been placed on a hormone blocker drug called “syneral” which has clearly helped my inflammation and the right photo was taken last week.
What is the next step in your endo journey?
I’m off to Greece in 2 weeks to enjoy a holiday and get myself physically and mentally prepared for an operation I’m getting in late August which will be to remove 2 large endometrioma (cysts) from my ovaries, clean up my endometriosis, unstick my organs and remove adhesions caused by the disease. I plan to be back on my feet 2-3 weeks after the operation and hopefully have improved conditions!
How has endo affected other areas of your life? Work, relationships, fitness etc.?
Endometriosis can affect everyone differently; it’s all about perspective. In terms of fitness – if I am feeling sore and bloated, I’ll take it easy and take a short walk or a light swim in a heated pool (this can be quite soothing). If I’m feeling I can push through the pain I try to do that. My partner tries to understand endo as much as possible, for a male in particular this can be quite difficult so I am grateful he has educated himself and pretty much knows more about it than me! He sits through every specialist appointment, he was the one to inject me with hormones through IVF and is by my side if I’m in hospital and encouraging me when I feel good! He has helped me conquer my pain and taught me the importance of health and movement and how this can affect my disease. In terms of work – I’m lucky enough to be able to work from home when I need to take time off for operations or ruptured cysts.
What are your favourite ways to:
Move: I swear by the Fitaz 28 day program, the meal and exercise plan is so easy to follow and it keeps me accountable to make sure I complete a work out daily!
Nourish: I nourish my soul with my beautiful friends and family and of course my little dog, Bobbi. Nothing feeds the soul better than love and laughter.
Believe: I lean on a lot of my close friends and family for support – they make me believe in myself and give me strength that I can get through anything I put my mind to.
Since going public with your story, what has the response been like?
I’m really grateful for the response I’ve received. I’ve had such an amazing response from friends, followers and the media. I have such lovely messages in my DMs with words of encouragement and well wishes – other people are thankful that I’m using my voice to spread the word about Endo.
What is one piece of advice you wish to give to women reading this who might be struggling?
Firstly, if you’re suffering from pain it’s so important to get checked by a doctor and get on top of this sooner rather than later – especially in young women who can put themselves in a better position for later on in life! In saying this if you’ve been diagnosed with Endo, it’s so important to learn how to live with endo and not let it control your life. I advise doing a lot of reading about success stories of women who have had endo and fallen pregnant and got on top of their disease. Positive reinforcement is key!
For more information on endometriosis, visit the Endometriosis Australia website.