I was just ten, on a school camp trip, when I first felt it – an indescribable pain tearing through my insides. I genuinely thought I was dying. No one had explained periods or endometriosis to me, let alone that mine would turn into a lifelong nightmare. For years, I bled heavily, wearing both a pad and a tampon and changing them hourly. I thought I was weak and needed to toughen up, like everyone else must be doing. Whenever I mentioned it to doctors, their response was the same – a look that said, “Some women just suffer.” And so, I did just that – silently and without much hope.
My legs would cramp with a bizarre, pulling sensation, and my stomach felt as if it were being twisted, stabbed, and crushed all at once. A throbbing ache radiated to my back and even down to areas I hadn’t realised could hurt like that. Going to the toilet was pure torture; I’d cling to the walls, biting back screams as a stabbing pain shot through me. Yet, I thought it was just part of being a woman.
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It wasn’t until my late teens that I saw a gynaecologist. By then, I could barely function. They recommended laparoscopic surgery, which was standard at the time. But when I woke up, the doctor informed me they’d found a large tumour that required another surgery to remove. My diagnosis? A benign tumour and, almost as an afterthought, endometriosis. I was given a pat on the shoulder, told to stay on the pill until I wanted kids, and assured I’d be fine. I didn’t realise then how wrong they were.
Living with endometriosis
In my twenties, I threw myself into my career, working in Sydney’s magazine industry. The ambition and fast pace helped push the pain into the background. With my family back in Melbourne and no one to confide in, I kept everything to myself. The career I’d dreamed of soon turned into a kind of pain therapy; I hid the agony under deadlines and events, striving to keep it together. Yet, as the years went on, I began missing out on the things I loved – plans with friends, travel, moments of spontaneity – all slipping away while I lay curled up at home, hoping to survive the next wave of pain.
In my thirties, I met the man of my dreams, and we began building a life together. When I was ready to start a family, I stopped taking the pill, and that’s when things went from bad to absolutely unbearable. The pain hit with renewed vengeance. Every month, I’d carve out days in my schedule to manage it, cancel plans at the last minute, and tell people I was “fine,” afraid they’d think I was flaky or unreliable. The reality was that I couldn’t function.
By this time, I was researching everything I could on endometriosis, seeking out alternative therapies like acupuncture, magnesium baths, and heat balms. Though they offered some relief, nothing could soothe the underlying agony. I found online support groups, finally connecting with women who understood. Sharing experiences and treatment tips, I began to feel less alone.
Trying to conceive with endometriosis
As my health deteriorated, my journey to motherhood became a struggle I hadn’t anticipated. My partner and I went through years of IVF, countless surgeries, and long stretches where I was lucky to have two pain-free weeks in a month. Eventually, the only option was a radical hysterectomy, which stole the possibility of biological children and thrust me into menopause overnight. In those moments, my life as I’d known it was gone, replaced by an endless cycle of loss.
Yet, there was a glimmer of change. After my surgery, I felt the urge to reclaim my story and find a purpose through my pain. I wanted to raise awareness about endometriosis and chronic pain to help others feel seen and understood so they wouldn’t endure the isolation I had for so long. It became my mission to stand alongside others, empowering them to find their own voices in the face of a medical system that often overlooks us.
Now, my struggle has given me a renewed sense of purpose. Through advocacy, I connected with women going through similar experiences and contributed to a movement demanding better understanding and treatment for endometriosis. But looking back, I wish I’d spoken up sooner. I wish I knew I didn’t need to suffer in silence.
Listening to the communal pain
Today, I hope my story helps other women realise they’re not alone and that their pain is real and worthy of acknowledgment. For too long, women’s pain has been trivialised and dismissed as part of our “lot in life.” But endometriosis is not just “bad cramps” – it’s a chronic, often disabling condition that takes a toll on every facet of life. The medical field has made strides in awareness, but we’re far from where we need to be.
The road has been hard, but I hope to make it easier for others by sharing what I’ve been through. Endometriosis is still widely misunderstood, with too many women left in the dark, told they’re just “unlucky.” I want to change that narrative, to advocate for earlier diagnosis and better treatments, and to ensure that the next generation doesn’t have to feel as alone and invalidated as I once did.
For every woman reading this who has been told to “just deal with it” or made to feel her pain doesn’t matter – know that your voice matters, your experience matters. We deserve a medical system that listens, believes, and strives to understand. Sharing our stories is just the beginning, but it’s a vital step toward a future where endometriosis is no longer dismissed but recognised for what it is: a serious health condition worthy of respect, research, and real solutions.
What is endometriosis?
Endometriosis is a chronic condition where tissue resembling the uterine lining grows outside the uterus, most commonly (but not exclusively!) attaching to the ovaries, fallopian tubes, and pelvic lining. This abnormal tissue responds to hormonal fluctuations, leading to inflammation and scar tissue formation. The most common symptoms include severe menstrual cramps, chronic pelvic pain, pain during intercourse, and infertility.
Although it affects approximately one in seven people assigned female at birth, diagnosing endometriosis can take many years due to symptom overlap with other conditions and a lack of standardised diagnostic protocols. Diagnosis also relies on laparoscopy – a surgical procedure – since non-invasive tests are not yet available, contributing to significant delays.
What causes endometriosis?
The precise cause of endometriosis remains unclear, but it is suggested that it may arise from a combination of genetic, hormonal, and immune factors. Some theories propose that retrograde menstruation, where menstrual blood flows back into the pelvic cavity, may play a role in the displacement of endometrial-like cells. Other hypotheses suggest that immune system dysfunction allows these cells to implant in areas outside the uterus or that genetic predisposition may contribute to the condition. Part of the challenge is that the condition remains vastly underfunded and under-researched (despite its high prevalence among people with a uterus). The uncertainty surrounding its causes only underscores the need for more research and funding.
Can endometriosis be treated or cured?
Currently, there is no cure for endometriosis, but common treatments include hormonal therapies – such as birth control pills, GnRH agonists, and progestin-based options – that aim to reduce the growth of endometrial-like tissue. Pain management often involves non-steroidal anti-inflammatory drugs (NSAIDs) and may also incorporate physical therapy, acupuncture, and lifestyle modifications like diet and exercise. In more severe cases, surgery may be recommended to remove endometrial growths and adhesions. Many individuals with endometriosis require ongoing management and supportive care to help manage symptoms effectively.
Jo Barry’s personal experience with endometriosis inspires her business Scarlet, a period care brand dedicated to providing comforting support for those who experience menstrual discomfort. Scarlet’s hero product, rae, is a wireless heat device designed to deliver soothing warmth wherever and whenever needed. Through Scarlet, Jo aims to offer innovative self-care tools and raise awareness around period wellness, helping others find comfort and empowerment in their journey.
