One in 10 women of reproductive age in the UK suffer from endometriosis, with 176 million women worldwide struggling on a daily basis with the condition.
Endometriosis occurs when tissue that behaves like the lining of the womb is found in other parts of the body, such as the ovaries, the lining of the pelvis and the top of the vagina.
It can cause sufferers – including the likes of actresses Daisy Ridley and Lena Dunham – to experience painful or heavy periods, pain during or after sex, fertility issues, exhaustion, and frequent visits to the hospital.
It's not pretty – it hurts, both emotionally and physically.
And while the condition affects the same number of women in the UK as those who are affected by diabetes, it's a subject so rarely spoken about; locked away behind bathroom doors and suffered in silence during endless hours in hospital waiting rooms, as science continues to find the cause and cure.
That's why Thessy Kouzoukas, who co-owns fashion brand Sabo Skirt, has come out on Instagram to show the reality of living with endometriosis.
Last week, the 27-year-old bravely posted two nude photograph of herself standing in front of a bathroom mirror: one picture showed her body three weeks after a ruptured cyst, while another showed Thessy's stomach while she currently takes a drug that has stopped her hormones and sent her into early menopause.
'This is me. This is endometriosis,' she captioned the post.
Explaining she never intended to show her 100,000 followers the private photos, Thessy explained in the caption that following an up-coming trip to Greece and taking her medication, she hopes to be 'in best condition both physically and mentally' for a seven-hour operation to treat her endometriosis in August.
She concluded the post by encouraging women and men to talk more openly about endometriosis and find help from medical professionals.
'Please, spread the word about endo,' she wrote. '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,' she added.
As a result, Thessy's post has received over 8,000 'likes' and over 700 comments from women around the world, praising the fashion star for her honesty, giving other women 'the courage and strength' to speak up about their stories, and raising awareness of the terrible condition.
After news broke about her photos, ELLE UK caught up with Thessy to find out a bit more about her condition, how she felt about the Instagram post, and what she hopes for the future for endometriosis sufferers:
What made you feel compelled to share your story on Instagram?
The day before I posted that photo I had shared a post about my fitness journey and how it has helped my symptoms of endo. I received over 50 direct messages overnight from girls who also have the same condition and just want to thank me for talking about it, and other girls who told me they felt alone and that no one understands.
Endometriosis is such a silent disease, partly because it is unseen. You can not physically see the disease and the damage it causes inside of you. These photos were the closest thing to explaining the physical effects of the disease. I wanted to inform people that this disease is very real - I think everyone is used to seeing me fit and only posting photos where I look happy and healthy so I wanted to show the other side, the 'silent' side that no one sees.
I was a little worried that people would think it was inappropriate, but the positivity that came from the post is amazing and I'm so glad I shared it.
What do you hope your picture will do for other women?
I hope this picture shows other women who suffer that they're not going through this by themselves. So many girls think they're suffering alone and feel alienated. I think as someone they follow for fashion it would be comforting to see that even people who appear to have a carefree life can be suffering too.
I wanted to educate both men and women of the affects of this disease, and with the shock of my photo I was hoping they would be interested to educate themselves further.
What's the reaction to the post been like?
I'm still receiving direct messages that came from this post. I have had thousands of girls message me, and messages of encouragement from men too! Some thanking me, some with the disease and some without, other girls asking for advice, and asking what I think about their situation.
I've had so many people come up to me personally and thank me and the reaction I've had from media is amazing. I'm so happy to be sharing my story to spread the word of this disease that should be talked about and investigated.
When were you first diagnosed with endometriosis?
I was first diagnosed in October 2013 after a scan showed up a 9cm cyst inside my right ovary and I was sent for a laparoscopy to investigate. I was experiencing intense period pain all month long and odd throbbing in my lower stomach.
What have been some of the most challenging moments to date living with the condition?
I think I've handled endometriosis quite well. I recognise that it is a disease I live with but try not to let it take over my life. It's easy to let endo control your life more than it has to which can be quite challenging to let go of.
I do find it particularly difficult to explain to people what I'm going through as this disease is not taken too seriously especially amongst men and women who have no experience with it.
It's especially hard to try and explain the frustration and pain I endure to my partner as he's in the fitness industry and just wants to see me as fit and active as possible which can be hard for me at times. He does an amazing job trying to understand what I'm going through on those bad days, but even being this close to someone with endometriosis just shows how difficult it can be for people to grasp the effects that the disease has on every day life.
What's the scariest aspect of living with endometriosis?
The ultimate concern is the link between endometriosis and infertility. There is no hard evidence that endometriosis causes infertility, but there happen to many strong links between the two. I try to focus on the stories where women riddled with disease fall pregnant and have a family.
A truly inspiring woman.
Katie O'Malley is the Site Director on ELLE UK. On a daily basis you’ll find Katie managing all digital workflow, editing site, video and newsletter content, liaising with commercial and sales teams on new partnerships and deals (eg Nike, Tiffany & Co., Cartier etc), implementing new digital strategies and compiling in-depth data traffic, SEO and ecomm reports. In addition to appearing on the radio and on TV, as well as interviewing everyone from Oprah Winfrey to Rishi Sunak PM, Katie enjoys writing about lifestyle, culture, wellness, fitness, fashion, and more.
