Life with Endometriosis: My Story of Struggle and Strength

For years, I believed no one could hear the screaming in my belly.

Not as a metaphor, and not as an exaggeration. The pain that lived inside me from the age of fifteen was so consuming, so relentless and so consistently dismissed by every medical professional I turned to that I began to wonder if I was the only one who could feel it.

This is the story of what that felt like. Not the science and not the food lists, just the human, honest and sometimes brutal reality of building a life inside a body that seemed determined to fight me at every turn. It's also the story of what happened after the diagnosis, which is the part nobody warned me about.

It's the story I needed to read when I was at my worst. I hope it's the one you need today. 💛

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Disclaimer: The information shared on this website is for general informational, educational and inspirational purposes only. It is not a substitute for professional medical advice and is not intended to diagnose, treat, cure or prevent any disease. Always seek the advice of a qualified healthcare provider with any questions about a medical condition, or before making changes to your diet, lifestyle, medication or supplements.

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The Beginning: A Childhood That Felt Uncomplicated

I remember what it felt like before everything changed.

Days that began without dread. A body that moved freely. The particular lightness of being young and healthy and completely unaware of how precious that was.

I grew up in Poland, roaming backyards and making magic out of ordinary afternoons. I loved sport. I was competitive, physical and alive in my body, the way children are before anything has taught them to be afraid of it.

I was fifteen when that changed.

My first period arrived with a pain so far beyond anything my friends described that I knew, with the instinct of someone who knows her own body, that something was wrong. I didn't have the words for it yet. I didn't have a diagnosis, a community or a single adult who believed what I was going through.

What I had was pain, and the start of a very long journey towards understanding it.

The Early Years: Dismissed, Isolated, and Running Out of Hope

The way doctors responded to me as a teenager set a pattern that would repeat for the next seventeen years.

Emergency calls that led nowhere. Gynaecologist appointments where I was handed painkillers and the contraceptive pill and told I was "just one of those unlucky ones". A dismissal so complete and so consistent that I began, as dismissed patients so often do, to believe it. To wonder if the problem wasn't my body, but how I perceived it.

School became its own battlefield. My PE teacher called me lazy, this to a girl who had loved sport her whole life and thrived in every competition she'd ever entered. My grades suffered. Friendships became complicated by absences and limits I couldn't explain, because I didn't understand them myself.

The isolation of those years is hard to describe to someone who hasn't lived it. It isn't simply loneliness. It's the particular, corrosive loneliness of suffering that no one around you can see or acknowledge. Of being in a body that is screaming while the world carries on as if nothing is happening.

I carried that loneliness for a very long time.

A Bold Leap: Leaving Everything Familiar Behind

At 19, I bought a ticket to London.

Part ambition, part desperation, part the simple need to be somewhere that didn't already know my story and hadn't already decided what it meant. I wanted independence. I wanted possibility. More than anything, I wanted to become a version of myself defined by something other than monthly pain.

London was harder than I'd imagined. A new language, a new culture, and a city that doesn't stop for anyone, least of all a young woman from Poland carrying a condition nobody had taken seriously.

But I stayed. And in staying, I slowly and imperfectly began to build something, even when I couldn't yet see what it would become.

The Lost Years: Surviving Instead of Living

My twenties were defined by a particular kind of survival.

I studied child psychology and found real passion and purpose in it. I built a career as a professional nanny and maternity nurse, work I loved and was genuinely good at. And at the same time, quietly, I was falling apart.

My symptoms were dismissed again and again as bad PMS. The unpredictability of my health made steady work almost impossible. I moved between families, between jobs and between versions of myself I could keep up for a while, until my body forced another reset.

There were days I couldn't get out of bed. Days of curling into myself through pain I honestly thought might kill me. Migraines that lasted for days. Bloating so extreme I looked pregnant. A body so exhausted by its own inflammation that the simplest tasks felt enormous.

With no real support or understanding, I did what many young women in pain do. I found ways to feel something other than what I was feeling: partying, fast food, alcohol, cigarettes. Not recklessness for its own sake, but the desperate coping of someone who had run out of better options.

I understand now, with the compassion of hindsight, that I wasn't failing. I was surviving. And sometimes survival looks messy from the outside.

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The Awakening: Greece, Therapy, and the First Real Questions

At 28, I accepted a nursing position in Greece, and something began to shift.

The Mediterranean light. The slower pace. The distance from everything that had been holding me in a shape I'd outgrown. For the first time in years I had enough space to hear myself think, and what I heard, when I finally listened, was a body that had been trying to tell me something for a very long time.

I began therapy. I started yoga. I journaled. I sat with the questions I'd been too busy surviving to ask. Who am I without the pain? What does my body actually need? What have I never let myself say out loud?

I stopped taking the contraceptive pill. I knew it would mean more pain in the short term, but I wanted, finally, to understand what my body was doing underneath it.

At this point, I still didn't know that what I was living with had a name.

The Pandemic: When Progress Became Survival Again

In 2020, the world stopped, and so did I.

The pandemic hit just as I was finding my feet. Borders closed. Plans dissolved. Stuck at work in Greece as the lockdowns deepened, I watched the progress I'd made become fragile and out of reach.

When I finally got back to London in October 2020, I was more determined than ever to get answers. Then in January 2021 I caught COVID-19 myself, and it took what little resilience I had left: crippling migraines, bone-deep exhaustion and the loss of the fitness I'd worked so hard to rebuild.

Lockdown removed every distraction I'd ever used to avoid the hardest questions. In the silence, I had no choice but to sit with everything I'd been carrying.

It was one of the hardest periods of my life. In ways I couldn't see then, it was also one of the most necessary.

The Hardest Year: Loss, and Refusing to Accept Another Dismissal

In 2023, grief arrived on top of everything else.

My father died after a long and painful decline. I watched his body deteriorate. I witnessed his suffering. I was the pillar for my family through all of it, holding everyone else together while I came apart at the seams.

When he was gone, I fell apart.

Not dramatically, and not all at once. The way people fall apart when they've been holding too much for too long and the reason they were holding it is suddenly gone. I lost my footing, and for a while I genuinely couldn't see a way forward.

It took a long time to find the strength to grieve properly, and to see that the grief, the endometriosis and the years of dismissed pain weren't separate burdens. They were the same weight, built up over decades, finally demanding to be put down.

In the middle of that devastation, something shifted. The weight of it all finally became heavier than my fear of fighting for better care. I went back to my doctors. I pushed harder than I ever had. For the first time in my life, I refused to accept another dismissal.

And this time, someone listened.

The Diagnosis: Seventeen Years of Pain Finally Had a Name

In November 2023, aged 32, a laparoscopy finally confirmed what my body had been telling the world since I was fifteen: endometriosis.

The surgeon found adhesions on my colon and endometriosis in the pouch of Douglas, on both ovarian fossae and on the right uterosacral ligament, as well as an endometrioma on my ovary, sometimes called a chocolate cyst.

Seeing those findings written down was one of the most significant moments of my life.

Not because the diagnosis was good news. It wasn't. It meant ongoing management and a condition that would be part of my life for the long term. But it was real.

Documented proof that what I'd lived with for seventeen years wasn't imagined, exaggerated or the result of a low pain threshold.

I had always been real.

That knowledge, simple and devastating and freeing all at once, gave me something solid to stand on for the first time in my adult life.

Life with Endometriosis After Diagnosis: What Nobody Tells You

Life with endometriosis after diagnosis isn't the relief you might expect.

There's a version of this story where the diagnosis arrives and everything becomes clearer and more supported. Where the medical system wraps around you and guides you forward.

That wasn't my experience. A diagnosis is essential, but it's only the beginning.

At first, though, things did get better. After the surgery I felt much better for a while, with far less pain than I'd known in years. I thought the hardest part was behind me.

It wasn't.

2024: The Collapse I Didn't See Coming

Around the middle of 2024, my health collapsed.

Looking back, it had been building for years: chronic pain and inflammation, gut issues, burnout from work and an immune system that was completely run down. The surgery treated what it could. It couldn't undo everything else my body had been carrying.

I was having blackouts that left me disoriented and frightened. Migraines that lasted for days, sometimes with changes to my vision. Dizzy spells that ended in collapse. A fatigue so deep that no amount of rest touched it.

Standard tests kept coming back normal. Nothing about how I felt was normal.

It was only when I worked with functional medicine practitioners that a clearer picture emerged. My inflammatory markers were very high. Testing found SIBO, parasites and fungal overgrowth in my gut, my microbiome was badly out of balance, and I was low in several key nutrients my body wasn't absorbing properly. I treated the gut infections with my practitioner's guidance.

Seeing those results was sobering. But it was also, strangely, a relief. When you finally have an explanation, even a difficult one, you're no longer fighting in the dark.

It was the lowest point of my adult life. It was also the beginning of everything that matters.

The Promise I Made to Myself

At the bottom of everything, I made a decision.

Not a dramatic vow or a film-style turning point. Just a quiet, fierce, private promise, made alone in the middle of the night by a woman who had run out of every option except the one she'd been avoiding.

I would stop merely surviving my life. I would start genuinely looking after it.

What I Changed

I'm not sharing this as a plan to copy. Every body is different, and I've gathered the details of every change in Lifestyle Changes for Endometriosis. But this is what I did, and this is the order it happened in.

Food came first. I cut everything at once: sugar (and fruit for 8 weeks), alcohol, caffeine, gluten, bread and baked goods, dairy, red meat and ham, cooking oils, fried food, snacks and processed food. Later I brought foods back one at a time and learned that alcohol, cheese and dairy yoghurt are my three biggest triggers, and that I can't eat chickpeas or raw onion and garlic. I share exactly what I found in Foods That May Make Endometriosis Worse, and how I eat now in the Anti-Inflammatory Diet for Endometriosis.

Then I rebuilt my gut. Fermented foods became a daily habit: sauerkraut, kimchi, kefir, fermented gherkins and coconut yoghurt with live cultures. With my practitioner, I also used a probiotic and digestive enzymes, and I added L-glutamine. Giving my digestion proper rest, with a longer gap overnight and real breaks between meals, made more difference than I expected.

I supported my liver and lymph gently. No harsh cleanses. Instead, dandelion root tea, plenty of filtered water, and milk thistle and NAC chosen with my practitioner. If you're thinking of trying supplements like these, check with your GP first, especially if you take any medication. For my lymphatic system, I used dry brushing, gentle rebounding and lymph massage.

I looked after my nervous system. This took me the longest to accept, because I'd spent years being told my pain was in my head. But chronic stress is real and physical. I started meditation, breathwork, journaling, gentle yoga and Qi Gong, often for just five minutes a day. And I started learning about somatic therapy. I write more about this side of healing in Emotional Healing with Endometriosis.

I moved gently, but every day. At my worst I could barely walk to the end of the street. I swapped intense exercise for walking, swimming, restorative yoga and Qi Gong, starting with ten minutes a day and building slowly.

I lowered the chemical load in my home. One swap at a time, over months: white vinegar, baking soda and castile soap for cleaning, glass instead of plastic for storing food (I use Pyrex Cook & Freeze*), stainless steel and cast iron instead of non-stick pans (like Made In* and Staub*), and simple homemade skincare with aloe vera, jojoba oil and shea butter. I explain the research behind food storage in the cans and plastic section of Foods That May Make Endometriosis Worse.

Where I Am Now

Within the first few weeks of changing my food, my gut pain stopped, and my energy, brain fog, mood and anxiety began to improve. By around two months the changes were stronger. My migraines and joint pain eased, and I stopped catching every illness going around.

After about a year, my periods came with barely any cramps and no painkillers. When I do get some discomfort, Huntly Herbs organic raspberry leaf tea is what I reach for.

It wasn't quick, and it wasn't a straight line. There were setbacks, hard weeks and moments of doubt. Healing from years of chronic inflammation isn't somewhere you arrive and stop. It's something I keep choosing, every day, and seeing the results gives me even more motivation to keep going, especially on the harder days.

If you're in the middle of your own version of this story, still searching for answers, newly diagnosed, or years into a journey that feels endless, I want you to know your story can change too. Not because it will be easy, but because I've seen it change for me. 💛

From Me to You

Thank you for staying with me through all of this.

I know it was a long read, and I know some of it was hard. I wrote it anyway, without softening the difficult parts, because I believe the women who need this story most are the ones who need to see all of it. Not the highlight reel. The real thing.

Life with endometriosis has shaped me in ways I'm still discovering. It took things I'll never fully get back: years of health, opportunities, relationships, and an easy, carefree relationship with my own body that I still quietly grieve sometimes.

It has also given me things I couldn't have found any other way. Depth. Resilience. Clarity about what actually matters. A purpose that feels truly mine. And this community: you, reading this, wherever you are in the world.

You are not alone. You never were.

Keep going. 💛

Coming Next in The Endo Kitchen

Next up is Best Cooking Oils for Endometriosis: which oils I cook with, which I avoid, and what the research really says about olive oil, seed oils and butter.

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Keep reading

• Foods That May Make Endometriosis Worse: What the Research Says and What I Found

• Anti-Inflammatory Diet for Endometriosis: What the Evidence Says and How I Actually Eat

• Best Foods for Endometriosis: What to Eat and What the Research Shows

• Emotional Healing with Endometriosis: The Side Nobody Talks About

This post shares my personal experience, not medical advice. Please talk to your GP or specialist before making changes to your diet, lifestyle, medication or supplements.

With love, Lena

Founder of Live Beyond Endo

Stay connected, stay informed, and above all, stay empowered.