Endometriosis has consumed most of my life. From the pain that ruled my everyday day to the countless surgeries I’ve had, it’s shaped everything I’ve done and everything I’ve been. Yet despite all of this, there’s still no cure. How is it possible that a disease affecting 1 in 7 women remains so underfunded and misunderstood? This is my story – but it’s also the story of millions of women. And it’s time we started talking about it properly.
My Endo Journey
It all started in my teens – relatively manageable pain and discomfort that I brushed off as normal period stuff. By 20, I was officially diagnosed and had my first surgery – ablation, which basically burns the tissue away. It worked… for a bit. But like a weed that’s only been trimmed, not uprooted, the pain came roaring back worse than before.
Looking back, I spent years thinking I just needed to “woman up” and get on with it. We’re conditioned to believe period pain is normal, aren’t we? But this wasn’t normal. This was endometriosis hijacking my life.
When Endo Runs the Show
At work, I was living a double life. On the outside: successful career woman running a digital agency. On the inside: someone fighting through excruciating pain daily. Some days, I’d lock myself in the office loo for a cry, exhausted from pretending I was okay.
My social life? What social life? I became the queen of cancelling plans. The worst part was dealing with those who just didn’t get it – the eye-rolls, the “surely it can’t be that bad” comments. Trust me, it was worse than they could imagine.
Eventually, endo won the battle with my career. I had to close my agency – something I’d built from nothing – because I physically couldn’t manage anymore. Not being the boss or person I wanted to be was heartbreaking.
The Treatment Merry-Go-Round
There’s no magic wand for endometriosis. I’ve tried it all: hormone therapies, pain meds, alternative treatments – you name it, I’ve done it. The pill helped mask symptoms, but that’s all it did – mask them. Zoladex threw me into menopause for two years (hello, hot flushes at 30!). It was brutal, but honestly, still better than the endo pain.
Heat became my absolute saviour – the one consistent relief that actually worked. It was so essential to my survival that it eventually inspired me to create rae, my wearable heat device. I needed something I could take anywhere that would actually help when the pain hit – in meetings, on the train, wherever.
Online communities became my other lifeline. Finding women who truly understood what I was going through made me feel less alone in those 3am pain spirals when the rest of the world was sleeping peacefully.
But here’s the frustrating truth: despite affecting millions of women, endometriosis research and treatment options have barely moved forward. We’re still basically using the same approaches from decades ago.
Why We Need More Endo Research (Now!)
Despite affecting so many women, endometriosis remains shockingly underfunded and under-researched. Too many of us are dismissed, misdiagnosed, or just told to “get on with it”.
This isn’t just about period pain – it’s about a condition that invades every part of your life: your work, your relationships, your mental health, everything.
I’ve now had my uterus, ovaries, and part of my bowel removed, but there’s still no cure for endometriosis. Seven surgeries later, I’m still fighting. That’s why I created rae – to offer some relief where our healthcare system falls short. When the pain hit, I’d be frantically boiling kettles to fill hot water bottles that wouldn’t stay hot enough. With rae, I wanted to create something that actually worked – portable, powerful, and frankly, pretty enough to not feel like a medical device.
But we need more than just coping mechanisms. We need proper research, funding, and doctors who take women’s pain seriously. Until then, I’ll keep fighting. For myself, for the millions suffering in silence, and for a future where no woman has to put her life on hold because of endometriosis.
5 Pelvic Pain Game-Changers
- Heat, Heat, Heat: A quality heat pad makes all the difference for pain relief. The rae Heat Pad soothes deeply and looks chic anywhere.
- Pelvic Physio: These specialists work wonders on tension and inflammation, teaching body hacks you’ll wish you’d known sooner.
- Magnesium Magic: Use Soothing Sud Bubble Bath, Magnesium+ Spray, and quality supplements. Also, find it in dark chocolate, leafy greens, and avocados.
- Comfort First: Choose breathable fabrics. Scarlet Boyshorts balance comfort with style, and a HOMMEY robe adds luxury to period days.
- Inflammation Fighters: Switch to extra virgin olive oil, enjoy medjool dates with almond butter, and sip Golden Grind turmeric lattes.
Jo Barry is the founder of rae, a wearable period heat device. With three heat settings and 5+ hours of power, it’s USB-rechargeable, super slimline, and fits into a custom period undies pouch. Through rae and her brand, Scarlet Period, she aims to provide practical relief while advocating for better understanding of women’s health issues.
Read more about endometriosis in the June issue of MiNDFOOD, on sale now. GP Dr Jo Skinner reflects on the toll endometriosis takes on patients’ lives and unpacks the science behind this complex yet remarkably common disease.
