Two women share their heartbreaking stories of living with a disease that has cost them dearly but ultimately endowed them with resilience and purpose
Robyn’s Journey
I can’t recall ever feeling truly ‘normal’. I don’t remember what it’s like to step out of the house with only my phone, without the emergency kit I always carry. The kit holds painkillers of varying strengths for flare-ups or pain, anti-nausea tablets, laxatives, pain patches, Nexium, and more. And my constant companion—my trusty hot water bottle. We’re inseparable. This is life with Endometriosis and Adenomyosis, which, contrary to popular belief and fairy tales, isn’t just a period-related issue but a systemic inflammatory disease found in women.
My name is Robyn Murray. I’m 35, married with two children, and this is my story.
I would soak the bed, the couch, car seats, and more. I tried the pill, the Depo shot, and blood thinners. I can vividly recall my first corporate job at the front desk of a large financial services firm and realizing I had soaked through myself and the chair and couldn’t stand up without anyone noticing. I was mortified and filled with shame – periods weren’t as openly discussed then as they are now. A female colleague on my team had to wheel me to the bathroom in a chair that eventually had to be discarded. I wished the ground would open up and swallow me whole that day.
I began to seek medical explanations for what was happening to my body. I consulted doctors from different medical specialties who all told me I was a healthy 24-year-old with nothing to worry about. Take the contraceptive pill and carry on. I was now severely anaemic and they blamed my symptoms on that. I felt like I was losing my mind and would swing between depressive episodes and anxiety for years. I know now that I wasn’t losing my mind and that I am a fighter.
My husband and I decided we wanted to try for a baby in 2018, but we had no success – I even had him checked as I was convinced he was the issue. After a year and a half of trying, we decided to take a break because the emotional rollercoaster of trying had become too much. Six weeks later, I found out I was pregnant!
Like my previous pregnancy, I faced issues but gave birth to a healthy baby girl in February 2020. I didn’t think my symptoms could worsen, but I became housebound during my periods, experiencing excruciating pain, vomiting, and uncontrollable shaking.
In July 2021, after falling ill and making multiple visits to A&E, I, in desperation, requested a private blood test. The results showed my CA125 marker was elevated, which can indicate cancer. I was a wreck, convinced I was dying, and I was scheduled to see an oncology gynecologist in Dublin.
Thankfully, cancer was ruled out, and he referred me to another gynecologist. I saw the gynecologist nearly a year later, armed with a long list of symptoms and a photo album on my phone detailing how badly I was hemorrhaging. The gynecologist listened and scheduled a diagnostic laparoscopy for December 2022. I woke from the five-hour-plus operation to be told I had Stage 4 endometriosis. Strangely, I felt a flicker of happiness—validated at last after years of dismissal.
Regrettably, the excision surgery offered only temporary relief and my symptoms returned. I entered a chemical menopause in May 2024, and my mental health deteriorated significantly. Eventually, I followed my doctor’s advice and underwent a hysterectomy in September of this year at the age of 35.
I want anyone who reads my story to know that you are not alone and that Lisa, my close friend and co-director of Her Voice Project, and I are always here with our community to help you find your voice and be heard!
Lisa’s Journey
Endometriosis is a term many have heard but few truly understand. It affects one in ten women, yet it remains surrounded by myths, delays in diagnosis, and gaps in care. My name is Lisa, I’m 28 years old, and I live in Limerick. Like many women, my journey with endometriosis has been long and grueling, filled with pain, surgeries, and heartbreak. But it has also been a tale of resilience, advocacy, and hope.
For as long as I can remember, pain has been a constant companion. I assumed it was normal and believed the refrain that a woman’s pain should be endured quietly. It wasn’t until I was diagnosed with Stage 4 diaphragmatic endometriosis that I realised the full scope of the battle I faced. Endometriosis isn’t just about painful periods; it’s a chronic, systemic disease where tissue similar to the uterine lining grows outside the uterus, causing inflammation, scarring, and often excruciating pain.
In May 2024, I underwent excision surgery, regarded as one of the most effective treatments for endometriosis. Surgeons removed lesions from my diaphragm and other organs. For a moment, I felt like I was reclaiming a part of myself. The surgery brought relief, but it wasn’t a cure. A few months later, after the return of symptoms, I was told that my right diaphragm was so severely affected that it would need removal through an open operation, which would impact my quality of life. I would then require a second procedure to address the left diaphragm via keyhole surgery. The news hit hard—yet it’s important to note that the extent of my disease is exceptionally rare. The aim of my story isn’t to scare, but to show that endometriosis is not a “pelvic period disease” alone.
Facing this next hurdle has been both terrifying and empowering. On one hand, I’ve had to confront the magnitude of what this could mean for my health and future. On the other, I’ve leaned into my strength and the incredible support networks Robyn and I have built and continue to manage with Her Voice Project. Living with endometriosis has taught me to be a fierce advocate for myself and others, a role I wholeheartedly embrace.
Finding purpose through pain
In the midst of my own journey, I founded Her Voice Project, a support network for women with chronic illnesses like endometriosis and PCOS. I’ve connected with countless women whose stories echo mine, including my now co-director and close friend Robyn. These spaces have become lifelines—not just for others, but for me too. They’re places where we share knowledge, listen, and remind each other that we’re not alone. Robyn and I pour our hearts into this project, which has also led to the development of our podcast, The Spice Rack, where we explore women’s health topics in depth to ensure the unspoken gets spoken.
The stigma surrounding women’s health is something I’ve worked tirelessly to dismantle. I’ve spoken openly about my condition, its impact on daily life, and the need for systemic change. For too long, women have been dismissed or misdiagnosed. It took me years to receive a proper diagnosis, despite clear signs. If my story can help even one woman feel seen or heard, then I know it’s worth sharing.
Beyond the project, I’ve had to find ways to balance my career and personal life while managing a chronic illness. As a Lead Document Controller, I take pride in my professional role. Yet, there are days when the pain is overwhelming, and I have to remind myself that it’s okay to slow down. Chronic illness isn’t just a physical battle; it’s mental and emotional too. Learning to give myself grace has been one of the hardest lessons, but also one of the most rewarding.
Changing the narrative
There’s a common misconception that endometriosis only affects fertility. While that’s certainly a concern for many women, the disease impacts every facet of life—work, relationships, mental health, and even the ability to enjoy simple pleasures. For me, the most challenging aspect has been the uncertainty. What will my life look like in five years? Ten? I don’t have all the answers, but I’ve learned to focus on what I can control: my mindset, my advocacy, and my community.
As I prepare for my next surgery, I’m holding onto the belief that I’m more than my diagnosis. I’m a woman with dreams, ambitions, and a deep desire to make a difference. The surgery itself is daunting, but it’s also an opportunity—a chance to keep moving forward.
To anyone reading this who is facing a similar journey, know that you’re not alone. Endometriosis doesn’t define us, though it tries. We are warriors navigating a disease that demands so much from us, but we continue to rise. Resilience is vital – both for ourselves and the millions of women living with this disease. Let’s keep raising our voices until the world listens.
Looking back, I can see how far I’ve come. I’ve endured unimaginable pain, multiple surgeries, and countless days when getting out of bed felt impossible. Yet here I am, sharing my story with the hope that it inspires someone else to keep fighting.
Endometriosis is a journey I never asked for, but it has given me a purpose. It’s taught me the power of resilience, the importance of community, and the necessity of fighting for women’s health. My story isn’t finished – it’s still being written. And while I don’t know what the future holds, I do know this: I’ll face it with courage, compassion, and an unshakable determination to turn my pain into purpose.
Follow Robyn and Lisa @hervoiceproject on Instagram.
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