My Endometriosis and Infertility Journey: Living with Pain - Love Beyond Biology: Our UK Adoption & Parenthood Journey

I find writing—or even thinking—about endometriosis completely infuriating. It’s probably why I’ve put it off for so long. But it’s a big part of my story, our story. It’s also something that’s rarely taken seriously. My endometriosis and infertility journey deserves to be told. I have written about infertility grief and why we chose adoption in these posts.

Even now, with my pelvic organs stuck together, ovaries tethered, large cysts, deep infiltrating endometriosis (DIE), and confirmed infertility—I hesitate to speak about it. Not because I’m unsure of the reality, but because of how often I’ve been dismissed, disbelieved, and gaslit.

Even now, I refuse to go to A&E for flare-ups. Why? Because I fear I’ll be asked again if everything’s okay at home. That fear of not being believed never really goes away.

Where It Started: “You’ll Just Have to Get Used to It

I was twelve when it began. Crippling period pain & flare up’s anytime of the month, that made me shake, throw up, pass out. My first memory of seeking help was the school nurse.

“I’ll send you home this time, but you can’t do this every month,” she said.
“You’re going to have to get used to it.”

She handed me a single paracetamol. I was bent over, trying not to cry from the pain. My mum booked me a GP appointment. That was the beginning of years of appointments.

A Cycle of Dismissal: Normalised Pain

I won’t bore you with every GP visit. If you’re living with endometriosis, you already know the drill: “It’s probably just hormones,” “Try changing your diet,” “Let’s put you on the pill and see how you go.”

From 12 to 20, I had more appointments than I can count. Some doctors were fantastic—they listened, offered support, and prescribed medication that helped ease the pain (to a degree). But the care never moved beyond basic pain management. I believe the lack of research and understanding around endometriosis left them as powerless as I felt. One finally said:

“It does sound like endometriosis, but it’s tricky to diagnose.”

I knew I had endometriosis by the time I was 14. But I wouldn’t be diagnosed for another decade.

Surviving Without a Diagnoses

Eventually, I stopped asking for help. I’d learned how to survive on my own.

I had my routine:

Heat pads became my best friend. (I swear by this rechargeable one – it’s saved me more than once.)
Medication in specific timings was key.
I knew what foods made it worse (cycle syncing helped me massively).
I planned my life around my cycle—never made plans during my period & hoped I wouldn’t flare during the month.

Birth control wasn’t an option due to an existing liver condition. So I braced myself, every month, for war.

Finally, A Breakthrough (Sort Of)

A year before COVID, one GP finally said, “We need to get this checked.”

I was hopeful. An ultrasound showed cysts on both ovaries. I was told this could be normal ovarian cysts.

“They can be normal,” the technician said. “Let’s check again in a month.” The cysts had changed size. Back again a month later. Same thing. “Let’s give it another month.” Then a phone call:

“I’m really sorry, but due to the pandemic, your scan is cancelled. Call us after lockdown.”

I gave up. I didn’t chase them. Part of me felt guilty for not fighting harder, maybe it was partly my fault for not advocating harder for my own care. But I was tired. I had lived in pain for over a decade. Somewhat managing. What was the point?

Marriage, Hope and Trying

In 2021, the world reopened. We got married. We were excited. Let’s have a baby!

But I still hadn’t been formally diagnosed with endo. I knew roughly what it was, but had no idea the havoc it could wreak on reproductive organs. After 1 year of trying (and then another year really trying—with ovulation tests, tracking apps, supplements), nothing.

The emotional rollercoaster—hope, disappointment, repeat—was draining. Emotionally exhausted, we went back to the GP.

The Diagnoses: Deep Infiltrating Endometriosis (DIE)

The GP sent us for tests. Mitchell received a diagnosis of teratozoospermia—his sperm had structural abnormalities like extra heads and tails. As for me, my hormone levels came back ‘normal,’ so the doctor ordered an MRI to investigate further.

That MRI changed everything. That’s how I learned I had Stage 4 Endometriosis, also known as DIE.

The tissue appeared to have grown deep into my bowel, ovaries, and pelvic walls. Organs were fused together. Endometriomas sat on both ovaries. High risk of future complications. It explained the agonising pain I’d lived with for 15 years.

But they didn’t really explain what this meant. They gave me two vague choices:

Wait for an invasive surgery (at least a 2 year wait)
Pain management

It felt like yet another brush-off. IVF wasn’t an option until after the surgery, if it worked. And even then the chances were slim.

I was in shock. I was just told the thing I wanted most in this world was very unlikely to happen.

Sometimes the diagnosis hurts almost as much as the symptoms—because you realise how long you’ve lived like this, unsupported.

What Is Deep Infiltrating Endometriosis

For those unfamiliar, DIE is one of the most severe forms. It burrows deep into organs—bowel, bladder, ovaries, even nerves. It’s painful, invasive, and often invisible on standard scans. You often need advanced imaging or exploratory surgery to find it.

After 15 years of being told “it’s normal,” I finally had a diagnosis. But the damage had been done, physically and emotionally.

The Unexpected Gift: Adoption

While surgery remains uncertain, I still don’t know when or if it’s happening—my life took a beautiful, unexpected turn.

We adopted our daughter, Willow. She changed everything.

In “The Moment I Met My Daughter”, I describe that connection. Every ounce of pain, heartbreak, and disappointment suddenly had a purpose.

Adoption wasn’t our Plan B. It was exactly the path we were meant to take. Endometriosis didn’t stop me from becoming a mum—it led me there.

Managing the Pain (Still)

Until something changes medically, I continue managing symptoms day-to-day.

Here’s what helps me the most:

Heat therapy: I now never leave without my rechargeable heat pack.
Timing meds to perfection.
Meditation & breathwork: I use 100 mindfulness meditations & the calm app daily for pain control and mental clarity.
Cycle tracking: My planner includes flare-up notes, moods, food triggers, etc. I also use an app to track my full cycle as ovulation can be painful also!

I also found the book Living Well with Endometriosis: What Your Doctor Doesn’t Tell You…That You Need to Know, by Kelly-Ann Morris a fantastic, insightful read.

What I’d Wish I’d Known

If you’re just starting out, here are a few things I wish someone had told me:

You are not imagining it.
Severe period pain is not normal.
You are not alone.
Endometriosis affects 1 in 10 women.
Get a second opinion.
If a GP dismisses you, ask for a referral. Don’t wait 15 years like I did.
Track your symptoms.
Journaling your pain and cycles is helpful for future appointments.
Advocate for yourself.
You deserve answers. You deserve treatment. You deserve to be believed.

Helpful Resources & Charities

If you’re navigating endometriosis, whether newly diagnosed or years in, these organisations offer vital support:

Endometriosis UK – Resources, forums, helplines, and medical guidance.
The Endometriosis Foundation of America – Research and education-based content.
Pelvic Pain Support Network – Focused on chronic pelvic pain, including endo.
Wellbeing of Women – Research charity supporting gynecological health.
Adoption UK – If your journey intersects with adoption, they are invaluable.

Final Thoughts

Endometriosis is cruel, relentless, and often invisible.

It robbed me of normal teenage years, a natural conception, and so much mental energy. But in a strange, beautiful twist, it also led me to Willow.

I share this not for pity, but in solidarity. If you’ve ever been dismissed, doubted, or left in pain—this is for you.

You’re not making it up. You’re not weak. And you’re definitely not alone.

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