Beth says her life could have been different if her condition had been taken seriously
Beth says her life could have been different if her condition had been taken seriously
This Sunday families around the country will be getting together to celebrate Mother’s Day, but for Beth Simpson it’s a day that merely serves as a reminder of a life she cannot enjoy. Beth had been in debilitating pain nearly all the time for years – but was consistently ignored by her GP.After constantly being dismissed, the 34-year-old Senior Commercial Finance Manager from Runcorn finally found out she had endometriosis. By the time she had a diagnosis, Beth was unable to have children – but says if there had been more research and early intervention, then she might still be able to.“Each Mother’s Day serves as a poignant reminder of how my journey has prevented me from experiencing being a mum,’ she says. “Living with endometriosis was incredibly debilitating. For years, I spent about three days a month unable to do normal activities, confined to my bed, trying to ease the pain with hot water bottles.“As time went on, the pain worsened, and it began to consume my life entirely. I’d find myself planning around the next dose of painkillers, wondering if it was time to visit A&E because the intensity of the pain could be so terrifying. Balancing work, a social life, and simply trying to maintain some sense of normalcy amidst the pain felt isolating. Fortunately, I had a supportive network that helped me get through those tough times.
“For the first three to four years, I suspected I might have endometriosis, but the medical system largely ignored my concerns. The only solution offered was hormonal contraception, which wasn’t viable for me due to its impact on my mental health. Endometriosis affected every aspect of my daily life. During my worst symptoms, I often felt as though life was unbearable. The pain was relentless, and nothing could truly alleviate it.“Before surgery, painkillers and hot water bottles were my only options—solutions that felt inadequate given the severity of the disease. I’d often cancel plans with friends, desperately try to push through work, I often wonder how I managed to get through some of those darkest times.“I’d wake up in the middle of the night, crying in pain, and having to wait hours for the next dose of medication to offer any relief. I spent countless nights in the bath, scalding myself in an attempt to soothe the burning and stabbing sensations. It was a constant battle, and the isolation was crushing. Every decision, from taking days off work to whether I should try to sleep through the pain or push through it, felt exhausting. The word that sums it up best is ‘relentless’.”After pushing for further investigation for years, Beth was eventually scanned and referred to an endometriosis specialist. “I vividly remember my first appointment with him,” Beth recalls. “He was candid about my diagnosis—stage 4 endometriosis, with two large endometriomas. My fallopian tubes were irreparably damaged, and my ovaries, bowel, and womb were all adhered to each other in what’s known as a frozen pelvis.“That’s when the severity of the disease truly hit me. I understood its potential impact on my fertility, and I realised that major surgeries, like bowel resections, could lie ahead.”
While receiving the diagnosis was shocking for Beth, she also felt relieved that she finally had a reason for her pain. “Strangely, receiving a diagnosis brought some relief,” she explains. “The pain I’d been experiencing was cyclical, so I’d sometimes question if it was as bad as I thought or if I was exaggerating. After years of being dismissed by doctors and made to feel like I was coping poorly compared to other women, having a clear diagnosis felt validating.“It was a moment of reassurance that I wasn’t losing my mind—there really was something wrong. But that relief was quickly followed by grief. I began to realise what I stood to lose, and now what I have lost, and that reality was devastating. The emotional toll of knowing that endometriosis can never truly be ‘cured’ means constant anxiety about what the future holds. The fear of the disease returning, along with the possibility of more surgeries, is a constant in the back of my mind, affecting how I plan and live my life.”Beth’s treatment journey has been life-changing, though not without its challenges. “The first surgery in 2022, which removed two large endometriomas, freed my fallopian tubes, and excised all visible endometriosis, gave me relief and ended the painful symptoms,” she explains.“I thought I was one of the lucky ones. However, 18 months later, a routine MRI revealed a 22cm mass in my abdomen, sparking concerns about cancer. After further evaluation, I underwent another surgery—this time a radical hysterectomy at the age of 34. The mass turned out to be another large endometrioma, not cancer, but the outcome left me infertile and devastated.“Now, my treatment involves HRT patches to manage menopause, alongside counselling to cope with the profound emotional impact of that surgery. Unfortunately, treatment options for endometriosis remain limited, and any future flare-ups could require additional surgery, which doesn’t feel like a sustainable or appropriate solution to such a common but debilitating disease.”
Looking back at her journey, what upsets Beth most is the fact that her fertility could have been saved if someone had taken her pain more seriously.“What frustrates me most is the lack of early intervention,” she explains. “Had I been taken seriously earlier, I might have been able to preserve my fertility. It wasn’t until after my full diagnosis that I was even given the option to explore fertility preservation, but by then, it was too late.“There’s a sense of grief that comes from feeling robbed of choices—choices that might have altered the course of my life. The lack of information and support for fertility options during the earlier years of my diagnosis is something I still struggle to comprehend.“While physically, I’m in a better place, the mental impacts of this disease will stay with me forever. Counselling has helped me deal with the grief, but I will always wonder ‘what if.’ “I’ll never stop feeling the loss of a future I never got to live. My heart breaks for all the others suffering from this disease, especially those whose voices aren’t heard and those who face a broken medical system in search of proper treatment and support.“I just feel so frustrated that something this serious, common, and debilitating remains so under-researched, with so few effective treatment options.” Beth hopes that in the future, other women’s fertility can be saved due to pioneering research.
BioGrad and its CEO Dr Natalie Kenny has made history by opening Europe’s first women’s health research tissue bank committed to advancing and understanding conditions impacting women, led by a team of solely female scientists. BioGrad is the UK’s leading laboratory-based learning provider for scientists, attracting elite scientists from 526 institutes in 21countries every year.“For far too long, women’s health has been an afterthought in scientific research,” Dr Kenny explains. “At BioGrad, we are proud to be leading the charge in changing this narrative. By opening Europe’s first dedicated private women’s health research tissue bank, we are not only addressing a critical gap in medical research but also empowering women to play a direct role in advancing healthcare and patient outcomes.“Historically, women’s health has been significantly underfunded, leading to devastating delays in diagnosis and a lack of effective treatments for conditions such as PCOS, endometriosis, menopause, and certain cancers. Too often, women face systemic barriers that leave their pain dismissed or misunderstood. For many, women’s health is an enigma – it is a complex maze articulating the difficulties women encounter in communicating and confirming their pain as well as understanding the intricacies of illness such as endometriosis and PCOS, and often the institutional disregard for health issues that directly affect women.
“BioGrad is committed to revolutionising women’s health by ensuring cutting-edge research and innovation are focused on the conditions that have been neglected for too long. This research tissue bank will help uncover groundbreaking discoveries that could change the lives of millions of women worldwide.“We are calling on women across the Liverpool City Region and beyond to take part in this vital research. By donating samples, they are actively contributing to the future of women’s healthcare. Our goal is clear: to close the gender health gap, improve outcomes, and establish the UK as a global leader in science and technology by 2030.”Beth is excited about the future and how this initiative can help other women suffering with endometriosis. “What I wish more people knew about endometriosis is just how consuming it truly is,” she adds.“It’s not just ‘painful periods.’ It’s a serious, life-changing condition that affects both your physical and mental health, and it often goes unnoticed or dismissed. The countless hours spent seeking out treatments and relief, only to find limited options, takes a toll on your mind and spirit.“I wish more people understood how profound this condition is and how it can devastate a person’s life. I’m hopeful about the future, thanks to initiatives like the BioGrad women’s health research tissue bank. It’s so exciting to see women’s health issues like endometriosis finally getting the attention they deserve.“Research, development, and innovation are long overdue, and I hope this leads to earlier interventions, less invasive treatments, and, ultimately, a cure.”Beth said: “Had Natalie and BioGrad’s research been available sooner, I might have been celebrating alongside other mothers this Mother’s Day.”
