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.

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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.”

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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.

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“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.”

“On the day 4 years ago,” my Instagram notification reads. I click on it and my screen opens up to a picture of a group of students smiling at a dessert parlour. Among them is me. I take a screenshot and send it on the group chat.

Me: Do you guys remember this?

Zachary: Omg I can’t believe that was 4 years ago

Joshua: Good times ah

Jason: That was a good day

Me: I can’t remember any of it…

In fact, I can barely remember the last five years, I realise. I open my camera roll and scroll back to the summer of 2016—the last summer that I can just about recall. I spend hours observing the memories of the last half a decade. I come across pictures of myself at birthdays, graduations, weddings, parties, and more, yet I can’t remember being at any of them. I realise then, that I can’t remember the best years of my life. In that moment, I knew something needed to change.

At this point it had been six years since I had been diagnosed with endometriosis, a chronic condition in which tissue similar to that found in the lining of your womb begins to grow elsewhere in your body, causing debilitating pain, heavy bleeding, bowel and bladder issues, among a number of other symptoms. In my case, the condition is advanced and has spread to the outside of my pelvis, meaning my organs are now beginning to stick together. While the disease can be controlled with contraception and painkillers, or through carefully executed surgery, there remains no cure.

About a year into my diagnosis, and just after my first surgery in June 2017, my endometriosis pain became so severe that it prevented me from living any semblance of a normal life. At this point, I was in the midst of my undergraduate degree but had pretty much spent the last year in bed. Every aspect of my life had been affected by my diagnosis, from my studies and career expectations to my friendships and relationships.

“Just take ibuprofen and paracetamol regularly,” every doctor I would see told me—as if putting a plaster over a bullet wound was enough to fix it. By the time I found a doctor who understood the severity of my pain and genuinely wanted to help me, my condition had worsened significantly. I constantly felt as if there were dozens of sharp, heated knives scraping and stabbing at my pelvis.

“I’m prescribing you some dihydrocodeine.” This was the first time since my diagnosis that a doctor had been willing to prescribe me a medication that was stronger than those you would find in the aisles of every supermarket. It felt like a mini victory—although I didn’t want to be in pain, it was nice to finally find a doctor who believed that my condition was severe.

Unfortunately, the dihydrocodeine barely alleviated the pain. So, he doubled the dosage. And then tripled it. When that didn’t work, he prescribed me tramadol. And again, he doubled the dosage, then tripled it. But even then, the pain kept worsening. So, he prescribed me morphine. And just like that, it was January 2022 and as I sat there scrolling through my camera roll and reminiscing over the past, I realised I had been taking opioids every day since June 2017. As a result, I missed out on the best years of my life.

Although I had heard of opioid addiction through the broader media and from the portrayal of characters on shows like Grey’s Anatomy, I had never really considered it in the context of the real world. After all, it’s not like I was taking these painkillers recreationally. I had taken them for the last five years because I was in agony, and I didn’t want to be. Unlike the TV characters I saw making frequent trips to rehab or sneaking through the cabinets in their friend’s bathroom to try and score some more drugs, I didn’t display any of the stereotypical attributes of an addict.

Despite the fact that my pain was still very much there, and in some ways worse than ever before, I knew that if I stopped taking opioids, I could at least regain some control over my life. I did not want to spend the next few decades in a zombie-like haze, just drifting my way through life without actually taking it in. I wanted to be present.

But no one could prepare me for what would happen next. Having lived in severe pain for a long time and enduring multiple surgeries, as well as other medical procedures, I guess you can say I’m a pretty strong person—or at least I would like to think I am. But as I sit here today, I can say with certainty that opioid withdrawal is one of the most physically and mentally torturing processes that I have been through.

I had assumed that because I wasn’t ‘addicted’ in the traditional sense, like those characters in the films and TV shows I had seen, I would simply be able to stop taking them and go on with my life. But science does not discriminate. I had no idea that your body can form an addiction to opioids after just taking them for five consecutive days. I wasn’t aware that over 2,000 people died in the UK in 2021 as a result of opioids. And I had never been warned about the fact that it would take me over ten months of slowly reducing my dosage before I would eventually be free of opioids.

As I write this, it’s been seven weeks since I completely stopped taking opioids. This victory is bittersweet. Although I can already feel myself regaining mental clarity and energy, I also feel anger for the time I lost. While I know that by prescribing me these painkillers, my doctors were just trying to help me, I also wish that they would have warned me of the possibility of addiction and the brutality of withdrawal. But they aren’t to blame—the issue is much larger than them, or me.

34-year-old Radha from Leicester, UK, was also prescribed opioids as strong as fentanyl to treat her endometriosis symptoms. But after years of consecutive use, Radha noticed that these painkillers were having a significant impact on her mental wellbeing: “As soon as I started getting those suicidal thoughts, it scared me because I sat there with a bottle of morphine, fentanyl patches, and sleeping pills on my bed. And I thought, ‘this is not good. This is scary’.”

In that moment, Radha too realised something needed to change. She mentioned what she did next: “I spoke to one of my endometriosis friends at the time and told her I’m getting really horrible thoughts right now. And I said, I’m so reliant on these drugs and I can’t function without them, because they’re the only things that will relieve me of my pain. And then my friend told me to give that box of medication to my mum so that she would be in charge of making sure I only took them when needed.”

Since then, Radha has made the decision to completely stop taking opioids and gain back her quality of life. But like me, she was concerned by the casual attitude that healthcare professionals have when it comes to prescribing those with chronic issues such strong opiates. “It was never taken into consideration that individuals like me are taking these very addictive opioids without any thought about the effect it has on them,” Radha continued.

“There was no psychological support. There was no check-up. There was no one saying, ‘Let’s have a review of your medication after a couple of weeks’. I remember just having them give me some more and increasing it and increasing it. I just kept thinking, how long? How long do I have to keep increasing this? It was quite a traumatic experience, to say the least.”

In 2017, the US Department of Health and Human Services (HHS) declared that the US was in the midst of an opioid crisis, with over 1.5 million people admitting they had an opioid use disorder in 2019 alone. And it seems that the UK is following in its footsteps, with the rate of opioid prescriptions having increased by 34 per cent in England between 2008 and 2018.

But why is it that people like Radha and I, who took opioids for valid reasons, were never warned about the potential side effects? Ewan Maule, Director of Medicines and Pharmacy at the North East and North Cumbria Integrated Care Board (ICB), spoke to me about why those from vulnerable communities are more likely to be prescribed the medication in question. “We know that opioids are frequently prescribed to more deprived populations and even more so in the North than in London, for example,” the expert shared. “And the same is true for people reporting their experiences with chronic pain.”

“So, putting all that together what we know is that, if you live in a deprived area in the North, you are more likely to experience chronic pain—and therefore take opioids and become addicted to and potentially die from the medication than if you live in a similar area in the South, or in a less deprived area,” Maule explained.

Fortunately, Radha and I were able to overcome our dependence on opioids despite never having been warned that this would be a possibility by our general practitioners or doctors. But what about other members of the chronically ill community who may not have the support or knowledge to allow them to make that step? Will they continue to spend the rest of their lives suffering?

Thankfully, it appears the National Health Service (NHS) is adamant about tackling this issue before the UK enters an opioid epidemic like the US. Maule enlightened me about the Painkillers Don’t Exist campaign, which “aims to raise awareness of the dangerous effects of long-term high-dose pain medication and empower people living with pain to make informed decisions about their health.”

“Opioids can be very effective at managing short-term acute pain, and in cancer or end-of-life pain. But when taken for longer than three months, they are unlikely to be effective and more likely to cause addiction and dependence on top of the underlying chronic pain,” the expert said. “We are about to launch a new phase of the campaign that will hopefully ensure nobody ends up in the position you did—everyone should have the risks discussed with them before they take opioids for any length of time.”

Even now, there are brief moments in which I feel a strong desire to give in—moments where the pain is so severe that all I want is to take a few tablets of tramadol. But then I think about how far I’ve come. I think about those ten months it took me to wean off opioids. I think about those five years of hazy memories. I think about that notification that changed everything.