Endometriosis: I had to stop modelling because I kept passing out.

Why some women are being driven out of the workplace by an illness. Carla Cressy worked as a model from the age of five until she was 17, but her burgeoning career was repeatedly cut short by debilitating fainting spells. "It was really embarrassing and I couldn’t do it anymore," she says, reflecting on a period of her life that was overshadowed by an illness that would take years to diagnose. From the age of 13, when she started her periods, she was plagued by excruciating pain, a constant companion that doctors struggled to understand. She was only finally diagnosed with endometriosis when she was 25, a staggering 12 years after her symptoms first began to dominate her life.

By the time of her diagnosis, her body had already endured unnecessary interventions. Doctors had removed her appendix, mistakenly believing she had acute appendicitis. "I was hospitalised for chronic constipation several times. I wasn’t able to eat, I was vomiting and in such severe pain but I kept being told it was a stomach bug," Carla recounts, her voice tinged with frustration at the years of dismissed symptoms. The relentless pain and the inability to predict when she would be incapacitated led Carla to feel that her chosen career was no longer viable. She ended up retraining as a beauty therapist, a profession she felt she could manage, but even then, she described herself as "unemployable and unreliable" due to her health. "I would have a client, then sit in a boiling hot bath to ease my stomach pain. It was horrible, but it was the only way I could earn a living," the now 35-year-old from Essex says.

Carla’s experience is far from unique. It is estimated that one in six women with endometriosis are forced to leave the workplace due to the condition, a chronic illness that causes tissue similar to the lining of the womb to grow outside of it, leading to a cascade of painful and debilitating symptoms. Carla recently gave evidence to an ongoing inquiry into how the condition affects women in the workplace, a crucial step in advocating for change. Currently, there is no specific legislation in the UK to ensure workers with menstrual health conditions are treated fairly when they need time off work, leaving many vulnerable and unsupported.

The long-term impact of delayed diagnosis on Carla’s body was severe. Because her endometriosis had been left untreated for so long, it had progressed into what is known as frozen pelvis disease, a condition where "everything was stuck together." This aggressive progression destroyed Carla’s reproductive organs, and the extent of the disease meant she was left needing extensive bladder reconstruction surgery and a total hysterectomy. "Thankfully, I managed to freeze my eggs but I can’t now carry a baby, so if I do decide to have children I will have to go down the surrogacy route," she shares, her voice a mix of resilience and the profound impact of her condition.

It was during her recovery, while bedridden after surgery, that Carla found solace and purpose by connecting with other women experiencing similar struggles. She started online support groups, which quickly evolved into her forming a charity, The Endometriosis Foundation. "It still shocks me that this condition is so common," she states, her voice filled with a passionate urgency. "When I was diagnosed 10 years ago, I was told I was too young and that it was rare. We now know that it is absolutely not rare." She emphasizes the widespread misunderstanding of the condition: "A lot of people still believe endometriosis is just a period condition. It’s so much more than that. We’re talking about lung collapse, kidney loss, extensive surgeries, infertility and careers being cut short."

Abi Smith, 27, also from Essex, experienced a similar protracted and painful diagnostic journey. She was prescribed a gut health yoghurt by doctors when she was just 10 years old, a seemingly innocuous recommendation for pelvic pain that would prove to be a profound misdiagnosis. When she started her periods soon after, the pain was so severe that she "felt like I was dying." Her working life was significantly impacted. "I worked in the post office," she says. "I would have periods where I was at work hunched over trying to serve customers, throwing up in the bin, running off to the toilet every three minutes." The physical and emotional toll was immense, leading to significant distress and a feeling of being constantly unwell.

Like Carla, Abi faced a lengthy delay before receiving a diagnosis, not until she was 21. She feels that doctors failed to take her seriously, dismissing her symptoms as something less significant. She is currently going through her third medically induced menopause, a treatment that "shuts down" her ovaries and helps manage her pain, but comes with its own set of challenges. "I’m just completely infuriated by everything I’ve had to go through. I’ve become a very bitter person because of all of this," she says, her voice raw with the accumulated frustration of years of suffering. Abi has applied for disability benefits multiple times and been rejected each time. She now works as a sales administrator, and despite her ongoing pain, she feels compelled to continue working. She finds hope in the current inquiry examining the impact of endometriosis on women in the workplace, but believes the scope needs to be widened. "It’s encouraging because it’s a real struggle to be productive and show up every day. I’ve always worked, I’ve always tried my best to stay in work even though I feel like absolute crap," she states.

Dr. Sula Windgassen, a psychotherapist, highlights a pervasive issue within healthcare: "It’s medical misogyny." She explains that women with endometriosis are often told their symptoms are "all in their head," a form of gaslighting that can have devastating psychological consequences. Many have been forced to quit their jobs, leaving them feeling isolated and exacerbating anxiety. "Therapy often becomes a space for exploring alternative careers, hybrid working arrangements, or other ways of maintaining employment. None of those decisions are simple," she observes. Dr. Windgassen describes harrowing accounts from patients: "Some individuals spend two or three hours every morning recovering from the pain caused simply by going to the toilet. I’ve spoken with women who describe their pain as being beyond 10 out of 10, where all they can do is lie down and endure it. That isn’t something a person can simply recover from and then continue with a normal work day. It’s incredibly sad that more support isn’t available." She is currently researching medical gaslighting and gathering evidence through questionnaires, underscoring a "serious problem within healthcare around medical misogyny and unconscious bias." She warns, "The more people are dismissed medically, the worse their health outcomes are likely to be. We see changes in inflammation, alterations in cortisol patterns, and a range of other biological effects that interact directly with health outcomes."

Monica Thomas, 34, from Ipswich, also endured years of uncertainty before her endometriosis diagnosis. Tragically, the condition has now spread to her lungs, and she is awaiting lung surgery, alongside operations on her bowels and pelvis. Monica also lives with adenomyosis, a condition where the womb lining grows into the muscle wall of the womb, pelvic congestion syndrome, which causes chronic pelvic pain, and Lichen Sclerosus, a chronic inflammatory skin condition. "Throughout that journey, I felt incredibly isolated, lonely, confused," she says. "I didn’t have anywhere to turn." Monica questions whether her health issues could have been prevented if doctors had believed her from the outset. Her research into the condition revealed a common thread of women feeling "unheard and unsupported." In response, she has channeled her experiences into action, establishing the charity Women’s Health Hope. The charity is set to open a women’s health hub in Ipswich next month, providing a vital space for women to seek emotional support and community. "For me, it’s been incredibly important to actually give women somewhere they can go so that they can let their emotions out, talk to people, feel supported. Because we don’t have it, we don’t have that support," Monica explains. She cites a recent study indicating that a staggering 84% of women feel unheard by healthcare professionals, highlighting the critical need for such support systems.

An NHS spokesperson stated: "Medical professionals, including GPs, should follow National Institute for Health and Care Excellence guidelines to diagnose endometriosis. Struggling patients can also receive specialist care for menstrual problems and endometriosis through women’s health hubs, which are available in most areas." While acknowledging these guidelines and the existence of women’s health hubs, the testimonies of Carla, Abi, and Monica powerfully illustrate the systemic challenges and profound impact of endometriosis on women’s lives and careers, underscoring the urgent need for greater awareness, earlier diagnosis, and more comprehensive support within both healthcare and the workplace.