Entrepreneur and activist Chelsea Leyland lived in pain for years before her endometriosis diagnosis. Here’s how she found healing through community.
For years, Chelsea Leyland's life looked fabulous from the outside—she was DJing fashion events, and traveling the world —but inside, she was suffering in silence, lost in a sea of misdiagnosis, and confusion before a traumatic night led to her finally being diagnosed with endometriosis.
After the initial shock, she galvanized her pain into action, creating her brand and community group Looni and taking on congress to advocate for better care for endometriosis patients across the country. As Endometriosis Awareness Month comes to a close, Leyland shares her story.There's a certain kind of insanity that comes from having chronic pain that no one believes in. I've lost count of how many times I was told it was 'just painful period cramps.'I spent 10 years trying to explain this pain to doctors. Years attempting to convince my OBGYN that what I was experiencing couldn't possibly be normal. I was sent home from the emergency room multiple times—hollowed out in agony, given oxygen and Valium, gaslit into believing this was just something we as women needed to endure. Perhaps I was a hypochondriac who couldn't tell the difference between mild discomfort and the kind of pain now recognized as comparable to a heart attack.A few years into my menses, my body began to feel like it was betraying me. The pain became unmanageable, a monthly attack so punishing I would pass out. Month after month, year after year: cheeks pressed against cold bathroom tiles, close enough to hurl into the toilet, too weak to make it back to bed.I was 17, shopping in London, when my period started. The pain came instantly, like someone shoveling salt into two open wounds around my ovaries, then binding them with barbed wire. Throbbing. Aching. Burning through my pelvis. Within minutes, I was stretched out on the Marylebone pavement, chewing gum stuck to the concrete beneath me, incapable of speaking, trying to breathe through it. My mother got me back to the car somehow, and I floated in and out of consciousness in the back seat while she drove, holding my hand.At 19, I moved to New York to study acting and pursue DJing—playing parties for brands like Chanel and Fendi. But behind the scenes, I was struggling with epilepsy, daily seizure medication, and cyclical episodes of pain, vomiting, and fainting. Then came an episode that changed everything.I woke at 5 a.m.—daggers to my ovaries. As I tried to make it back to bed from the bathroom, I remember this strange sensation in my hands. I looked down to see them curling over, locking out, as though they were transforming into a claw, something feral, something uncontrollable. My roommate heard me crashing around, came in, took one look at me, and said, 'I'm calling an ambulance.' I kept telling her I was going to have a seizure, but was later told in the hospital that what I had experienced was something called tetany—a medical term for when your hands lock out due to hyperventilation caused by extreme pain.Before this episode, synthetic hormones had been offered on repeat. By suppressing my periods, my symptoms may also be suppressed. There was little acknowledgement of trying to get to the root of what I was experiencing. Finally, I was offered a laparoscopy. I woke up in the hospital hearing the words ‘endometriosis’ for the first time. I was told it was rare, though we now know one in ten women live with this condition, yet until recently it remained invisible, dismissed, barely discussed. I was told scar tissue, similar to the lining of the uterus, grew outside of the womb, but we now know endometriosis is a full-body chronic condition—lesions can grow anywhere.Relief—not that I'd be out of pain, but that my pain had a name. That I hadn't been making it up. Finally, an explanation for the chronic fatigue, pain during menstruation, ovulation, sex, the joint pain, the GI issues dismissed as IBS, the painkillers I'd take preemptively, anticipating my period starting in the night.Post-surgery, there was some healing and some reduction in pain. But six months later, the endo came back with a vengeance.This time the pain was different—lower, as if a metal pole were being shoved inside me from behind, twisted, pulled out, inserted again. I've learned to manage it—not cure it, but coexist with it. An anti-inflammatory diet, where possible: less sugar, no gluten. Acupuncture. Pelvic floor therapy. Seed cycling. Cannabinoid suppositories. Bioidentical progesterone, not synthetic hormones. Movement tailored to where I am in my cycle. Looni's topical pain rub. A PEMF amethyst heat mat. Some days it works better than others, but I have tools now, which is more than I had aged 17.What I wish I'd known is Endometriosis’s impact on fertility. Not just egg quality, but implantation. My fertility journey was long and brutal. My first loss was an ectopic pregnancy—the fetus was stuck in my fallopian tube. I was in London for the scan, and I floated in beaming. They covered my belly in thick transparent jelly, and I locked my eyes on the screen above. There it was—a flickering picture. My baby. The nurse's voice cut through: 'I'm sorry...here is your baby...but it's in the wrong place. You need surgery urgently.' I woke up in the hospital having lost my baby and my right fallopian tube.I then lost another baby months later. There's a strange initiation that happens with pregnancy loss—you've heard the word 'miscarriage' your whole life, but you don't understand the weight of it until you're the one picking yourself back up, dusting yourself off, and trying again. My friend Kate gave me advice that carried me through: do one thing each month you couldn't do if you were pregnant. Wine. A long run. Teeth whitening. Small acts of reclaiming your body while you wait. Through my darkest days came small moments of grace: acquaintances and strangers reaching out, sharing their own losses, their own attempts to conceive. Without thinking, I started adding us all to a group. That's how the Looni community was born.Through my darkest days came small moments of grace: acquaintances and strangers reaching out through social media and beyond. I'd been vocal about my fertility journey, and suddenly I was being connected to friends of friends on similar paths, women sharing their losses, their attempts to conceive, the fear of a fresh endometriosis or PCOS diagnosis after years of trying. Women from all walks of life, bound together by the grueling disappointment they faced cycle after cycle. Without much thought, I started adding us all to a WhatsApp group. A safe space where we found solace through the power of identification—where you didn't have to hide, where others understood the pain of scrolling past yet another baby announcement. This group of women, who didn't exactly choose to be members, became a club held together by tender threads. We traded not just information but lifelines: 'Have you tried an Intralipid IV? That's what worked for me.' 'I'm seeing this doctor uptown, she actually listens.' Small breadcrumbs of hope, passed hand to hand, and just like that, a friend told a friend, and it grew and grew.What began as a personal health challenge has grown into a much broader mission. This is about reshaping the conversation around women's health and hormones, advocating for better support, education, and outcomes for women at every stage of their hormonal journey. I recently traveled to Washington, D.C., with The Women's Health Advocates, a coalition I'm part of, to walk the halls of Congress to advocate for better research and care for patients with Endometriosis and Adenomyosis, as research remains massively underfunded. In 2024, the NIH allocated $28 million to endometriosis research compared to $1.5 billion for men’s reproductive health, and endometriosis surgery still doesn’t have its own CMS billing code, which discourages specialists from entering the field and leaves patients waiting years for proper care.I consider myself one of the lucky ones. I went on to naturally conceive my son, and I breastfed him for almost three years—in part because, yes, it was a beautiful and easy journey for me, but also because it kept my endometriosis symptoms at bay. Anyone who lives with the condition knows how rare and precious those quiet stretches of relief can be. And if breastfeeding a walking, talking toddler bought me even a little distance from endometriosis, then every raised eyebrow in New York City was a price I was happy to pay.
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