Despite the fact that it affects an estimated 10 per cent of women worldwide, few will have heard of endometriosis—a chronic condition that involves tissue similar to the lining of your uterus growing elsewhere in your body. Endometriosis is considered by the NHS to be one of the most painful conditions to live with and can have a debilitating impact on the lives of those it impacts.

So, why is it that there’s such little awareness around a condition that affects so many women? Well, the lack of awareness and general misunderstanding around endometriosis stems from centuries of stigma surrounding women’s health. To this day, many aspects of the female body aren’t entirely understood, including what causes endometriosis and how it can be cured.

As a result, endometriosis sufferers have to endure a long battle to get a diagnosis, and sometimes an equally as long battle to get the treatment they need. But, over the last decade, there’s been a shift in our attitudes towards the condition, and endometriosis sufferers are getting tired of not being listened to.

This Endometriosis Awareness Month, SCREENSHOT spoke to three endometriosis warriors who, despite facing a turbulent and ongoing battle with the disease, are using their voices to fight for change.

Like many endometriosis sufferers, Carla Cressy was only 13 when she first started experiencing abnormal symptoms, which included “crippling pain and irregular bleeding.” After a year of both Cressy and her mum trying to convince her doctor to take her symptoms seriously, she was finally referred to a gynaecologist, where she was hopeful that she would get some answers.

Unfortunately for her, like so many other women who present with these symptoms, she was told that “periods are supposed to be painful” and dismissed as someone who clearly just had run-of-the-mill menstrual cramps—a universal problem which is also heavily downplayed and normalised.

By the time she was 18, Cressy had tried seven different types of hormonal therapies in hopes that they would regulate her periods and help with the pain, but so far nothing had helped. Despite the fact that it had been years since she was first referred to a gynaecologist, Cressy’s GP was still reluctant to send her back.

“What made it really difficult actually was that because I’d already been seen by a gynaecologist when I was so young and told everything was okay, it was really hard to then get back past my GP to go and see a gynaecologist even though things progressed and the pain was worsening,” the founder recalled.

Cressy was eventually diagnosed with endometriosis at the age of 25, over a decade after she first started experiencing symptoms. By this time the disease had already had a drastic impact on her life, including her career and relationships. Although she had now received a diagnosis and was finally on the road to getting some answers, her symptoms continued to worsen, to the point that she was admitted into hospital after experiencing agonising pain and rushed into emergency surgery.

And as time went on, things didn’t get any easier. By the time she reached her 30s, Cressy had endured endless surgeries, procedures, investigations, and agony. And throughout it all, she felt one thing: alone.

View this post on Instagram

A post shared by Carla Cressy (@carlacressy)

Though information online surrounding endometriosis has grown vastly over the years, as anyone who’s ever been diagnosed with a disease knows, it can be difficult and daunting to navigate health-related information and identify accurate sources all by yourself. And while there seemed to be plenty on the basics of endometriosis, there wasn’t much out there for someone like Cressy, who had already lost so many years of her life to this disease—so she decided to take matters into her own hands and begin her own endometriosis charity.

“This is why I set up The Endometriosis Foundation, because after spending countless days and nights searching for information, support, advice, and guidance, there was nothing. There was just nothing there.”

With the official launch of The Endometriosis Foundation being celebrated at the House of Lords this Endometriosis Awareness Month 2023, Cressy is already overflowing with ideas on how she can make her charity the go-to destination for endometriosis sufferers in the UK.

“My ultimate goal is for The Endometriosis Foundation to be everything that I never had. Our official launch will be a great opportunity to not only introduce the charity, but also really shine a light on all the issues that people with endometriosis face.”

First on her agenda? Cressy wants to make fertility preservation options more accessible to those suffering from endometriosis. At the moment, egg freezing is only available on the NHS to cancer patients or those undergoing gender reassignment surgery. Although endometriosis can have a severe impact on fertility and many patients are told to try and get pregnant as soon as possible to avoid potential infertility later on, the only thing they have access to on their journey is a single round of IVF on the NHS.

“Fertility options really need to be prioritised. And, although I understand not everybody may want children, I believe everybody should have a choice. This is the message that we will be spreading and sharing so that hopefully, we can encourage people in the right positions and the right bodies to be able to do something,” Cressy shared.

Like Cressy and most endometriosis sufferers, Nat Blake’s childhood was significantly impacted by her early endometriosis symptoms. “I was missing a lot of school and it really affected my mental health back then. I was having heavy, heavy period, large clots, throwing up because of pain,” she told me.

While Blake tried to endure her symptoms for as long as possible, she had enough when they started to get in the way of her swimming, something that she was passionate about, so she turned to her mum for help.

To her surprise, it turned out that her mother, as well as other members of her family, had endured similar struggles with their health and had already received an endometriosis diagnosis—something that Blake had been completely unaware of until that moment.

Of course, given her family history, she turned to her GP with her concerns, and was instead met with a response that shocked her. “I was told that what I’m experiencing is probably fibroids, due to the fact that black women are more likely to suffer from fibroids.”

It wasn’t until Blake explained to her doctor that her mother was Caucasian and had already received an endometriosis diagnosis that they decided to take her concerns seriously.

The next few years involved back-and-forth appointments, misdiagnosis, and dismissal, leaving Blake completely exhausted and burnt out by her mistreatment. Despite the fact that endometriosis is considered to have a genetic component to it, she still couldn’t get doctors to investigate the issues until she started to experience trouble with conceiving.

By this point, Blake was already in her late 20s and had been suffering for years. While she knew of endometriosis through her mum, she still wasn’t really sure what the disease was, so like Cressy, she turned to the internet and was disappointed to find that the available information was limited.

“I reached out to a charity and a couple of groups. But I just found that I wasn’t getting anywhere. I wasn’t getting responses. I wasn’t getting emails back, even when I said I wanted to be a volunteer. So, I said, ‘You know what? I’m just going to go on social media and start talking about it and start sharing my experience.’”

Although the era of the social media influencer was well underway, there still seemed to be a huge stigma surrounding openly speaking about issues related to women’s health and in particular, gynaecological conditions.

Blake simply didn’t care: “Although some people were like, ‘Why are you talking about your underneath or why are you putting your business out there?’ I just felt like it needs to be done.”

View this post on Instagram

A post shared by NatBlake_Endowarrior (@natblake_endowarrior)

It was especially important for her to create a sense of community for ethnic minority communities, often in which talking about these issues is frowned upon. Now, years after she first began sharing her story on social media, Blake is able to regularly bring endometriosis sufferers together in person to connect and learn from one another, through her Sunday Sip events.

“It’s for individuals to share their journey and shout about whatever they feel that they need to shout about. But it’s also for those who are around them to come along and understand and ask questions, so it’s not just up to the person that is going through it all. It’s a chance to hear other people’s views,” Blake explained.

Dearbhail Ormond was just a teenager when she recalls experiencing her first endometriosis flare-up. “I was in Paris for a family trip. And obviously, I was excited to go away and do loads of fun stuff with my brother and my parents, but I spent the whole time in the hotel room. And what I felt was a kind of excruciating pain around my abdomen.”

Similarly, to Cressy and Blake, the road to a diagnosis for Ormond was not easy—it took an astonishing 18 years and had a significant impact on her youth. “I lost out on so much time because I was erratically unwell for a long time. I could look great and feel great, and within hours you’re bedridden and you’re bailing out of some social event, and you just don’t know why,” she told me.

It was only when she was already in her 30s and a family friend who happened to be a doctor prompted her to get a laparoscopy that Ormond even considered that she may suffer from endometriosis. Unfortunately, the surgeon was unable to find any evidence of the disease, leaving her back where she started.

View this post on Instagram

A post shared by Frendo App (@frendo_app)

“I came out of that and just felt deflated because I had no answers. I’d been through a really serious surgery, and I was just back to square one. And all of these emotions started running through my mind. I just remember feeling like, ‘Am I making this all up in my mind?’ I felt like such a burden.”

Not long after, Ormond was able to find a gynaecologist who specialises in endometriosis and provided her with a confirmed diagnosis. But even when she started treating her symptoms, the disease was having a significant impact on her quality of life and causing her body to suffer from an immense amount of stress.

“After my last operation, along with everything else, my teeth started to show the effects of having this chronic illness. So I went to the dentist, and he said that my immune system was basically just crashing after everything I’d been through. That was one of the hardest parts. I remember feeling like this disease is literally taking over my whole body and I can’t actually fight it anymore.”

Having worked in the start-up industry for a while, with cancer start-ups and KPMG start-ups, she realised there was a real need for change. That’s when Ormond and the Frendo team partnered with a professor to provide a screening survey to help those with suspected symptoms.

Through the app, Ormond hopes that endometriosis sufferers feel more empowered to advocate for the treatment they deserve. She explained: “So many people were feeling like they weren’t being heard by doctors. So, if you’re going to a doctor and saying, ‘I’ve tracked for three months. This is the pain I’m having. I’m having it here, here, and here. This is my cycle. This is the survey I’ve taken.’ They must take you seriously.”

Unlike other apps that simply allow you to track your cycle, Ormond designed Frendo to take into consideration the complex nature of endometriosis and the fact that the disease is so much more than a “bad period.”

With future plans for Frendo including working with the government to develop information campaigns around endometriosis for schools and employers, Ormond, like Cressy and Blake, is refusing to let endometriosis take any more from her than it already has and is hopeful that through her app, she will give endometriosis sufferers the encouragement they need to be the “CEO of your own health.”