“It’s Not My Fault: My 15-Year battle to an Endometriosis Diagnosis and the subtleties of shame”

A story about endometriosis, misdiagnosis, medical gas lighting and the subtle shame we might carry when our bodies need help.

I first started experiencing pelvic pain in 2010. At the time, I had no idea it would be the beginning of a 15-year fight to be heard. I was misdiagnosed with an ovarian cyst, sent home with painkillers and reassurances, told to get pregnant as a way to get rid of symptoms, all the now cliche things doctors say to gas light their patients,  when actually, my symptoms were the early whispers of endometriosis. Back then I had googled and read about endometriosis and presented this to the specialist insisting this is what I had, their reply was that “it was rare and very unlikely I had it.”

Fast-forward through 3 laparoscopy surgeries, countless appointments, crippling fatigue and pain, dismissed symptoms, and moments of questioning my own sanity… and only this year — 2025 — I finally received an official diagnosis:

✅ Stage 4 Endometriosis

✅ Adenomyosis

✅ Severe enough that I may need major surgery in the near future, infertility, and many meds more than I’ve ever had to take and a complete change of lifestyle.

Fifteen years.

Fifteen years of pain building.

Life shrinking.

Plans changing.

Hope fading.

My fight started up again in early 2024 when I began experiencing crippling pain. After years of gaslighting myself, convincing myself that the niggles, pains, and fatigue were something else. I finally surrendered to the cry of my body.

I went straight to my GP, who didn’t examine me but referred me for an ultrasound. I was told I’d get an appointment within a few weeks. Six weeks passed, so I called radiology directly to check on the wait time, at least six months. I couldn’t believe it.

I spoke with my GP and asked if there was any way to be bumped up the list. She said no. So, I paid $500 to go private, where the radiologist immediately diagnosed me with adenomyosis and strongly advised that I go overseas for a laparoscopy, as the wait times in New Zealand were atrocious.

I went back to my GP and asked again if she could mark my case as urgent. Again, she said no. At that point, I called the gynaecology outpatients department myself to ask about the wait time. By then it had already been six months. The woman I spoke to said it would be at least another 18 months.

I said, “That’s ridiculous, I guess I’ll have to save and pay to go private.” I asked her who she would recommend for private care. She replied,

“Oh, I’m sorry, management has told us we’re not allowed to advise people to go private.”

I asked why on earth not, and she said,

“Because the more people on the waitlist, the more funding we get.”

Yes you read that right. In complete shock, I told her that was one of the most disgusting and unethical things I’d ever heard, and that I knew she was just the messenger. I asked how she felt about it, and she said, “Not great.” Eventually, she gave me one or two private names anyway.

Later that year, I paid another $500 to see a private gynaecologist, who confirmed that yes, I did indeed need a laparoscopy. However, it would cost at least $20,000 privately, or I could continue waiting on the public list to see a gynaecologist before being added to the surgery waitlist.

So I sat tight for another year, the pain worsening, until one day, I received a missed call and a voicemail. Someone from the hospital had called to ask if I still wanted to remain on the waitlist. My heart dropped. I tried calling back several times but couldn’t get through. Is this a joke? I thought.

All week I tried different numbers until finally I reached the gynaecology outpatients department again. I explained the deep stress that missed call had caused me and my fear for other women going through the same thing, who might not realise that if they didn’t respond, they could lose their place on the list after months or even years of waiting.

I told the woman on the phone that I felt for her too. I could only imagine the number of distressed calls she must be receiving. She sighed and said I was one of many women who had called that day. Then she said something that completely shook me.

“You can always go private,” she said.

“Excuse me?” I replied. I reminded her that last year, I’d spoken to someone, who, as it turned out, was her, who told me the opposite: that they weren’t allowed to suggest going private because keeping people on the public waitlist increased funding.

She said, “Oh yes, that was me. But now management is saying the opposite, they want to clear the backlog.”

I was stunned. Once again, disgusted by how the system seemed to treat women’s pain as an administrative burden rather than a health crisis. She went on to tell me that the government was now funding 50 women to go private to help shift the backlog, but that private specialists only wanted the “simple” cases.

As an apology for my distress, she added me to the private list and said I’d receive a call within weeks. Things moved quickly after that. Before I knew it, I was out of surgery and being told I’d had endometriosis for at least a decade. It was so advanced that more serious surgery might be needed in the future. The nurses asked me several times throughout the day if I needed more pain medication, which I declined. They couldn’t quite fathom why I didn’t want any. I explained that no pain compares to the pain I’ve already lived through. They told me I must have a high pain threshold and they were right, though not for the reasons they thought.

On reflection, I realised that pain had become my “normal” for years. I had become a master of dissociation and disembodiment, survival skills that dulled my awareness of just how much I was carrying. That’s why, over these past few years, as I’ve done deep work through yin and Somatic Dance, the experience of truly returning to the presence of my body has at times felt absolutely brutal. There’s been so much pain, emotional as much as physical.

So sorry for the not so simple case Dr.

Yes, I’m angry. I have every right to be. I’m not just angry about my experience, but for every woman who has been in my shoes, and for every woman still stuck on that waitlist. I lay in bed, nauseous from the surgery, and I just cried, for all the women who didn’t get the opportunity I did, who are still waiting, still hurting, still unheard. I’m also angry because I was given basically 2 options, get pregnant now while you can in hope symptoms will clear or take these injections to induce early menopause… fun!!

Fifteen years where my symptoms were, according to doctors:

“Not bad enough to put me on the urgent wait list”

“It’s IBS or PID”

“Quite common for a woman to have these days .”

“Could be cured with pregnancy as symptoms seem to go away then”

“ it’s just something you’ll have to live with”

“ it’s in your head, let’s refer you to a psychologist”

“Something you can manage if you relax and destress”

All while the healthcare system, especially here in Aotearoa, continues to crumble. The waitlist for gynaecologist specialist care in Hawke’s Bay stretched beyond 18 months minimum. My body didn’t have 18 months to spare. Hundreds spent privately meant the difference between surviving… and surrendering.

People are living in chronic pain.

People are losing fertility.

People are losing hope.

Some are dying because of delays.

The system is breaking and we are breaking with it.

The Identity I Built to Survive

Like so many women, I became my own doctor, therapist, researcher and healer.

I threw myself into holistic health, stress reduction, nervous system regulation, trauma healing, anti-inflammatory diets…because no one else was helping me.

I formed an identity around being able to fix myself.

Medication felt like defeat and I’d lost all hope in modern medicine.

A decade ago, after being pressured for so long into contraception by an ex who insisted it was solely my responsibility, I finally came off the progesterone-only mini pill. It felt like reclaiming autonomy.

I thought I was doing the right thing the, empowered thing.

But in a recent appointment with Dr. Samantha Newman (FemaleGP) the first doctor in years who truly listened…. something clicked.

We traced the timeline together:

The exact year I came off the pill was the year (2014)…

• Anxiety erupted like a tsunami

• Panic attacks took over

• Suicidal thoughts appeared

She looked at me gently and said:

That’s hormones. Those shifts can be massive and that pill could have been keeping everything balanced for me. But the tether to my ex needed to be cut and the pill was a part of that process in reclaiming myself again and trying to fix my symptoms myself.

I went on to say to her how “I know I have systemic inflammation because of the stress and trauma I’ve been through.”

Dr Sam then went on to say something that completely stopped my in my tracks…

“ this is not your fault”

I had never, not once, connected those dots, nor considered that inflammation in my body was not my fault.

Studies show that genetics play a major role in endometriosis, accounting for about half of the overall risk.

I held my breath as I tried to fathom how for so many years I had ingrained in myself that this was all my fault. I had not healed fast enough, relaxed enough, ate enough greens, protein, supplements, anti oxidants, probiotics, fibre, or used enough wild yam cream, castor oil, ice packs, heat packs, nor done enough therapy, yoga, dance, exercise, fasting, energy healing, essential oils, sweat lodges, rituals, punching bags, crying, laughing, connecting etc etc etc or done enough inner trauma healing work 🙄🤷🏻‍♀️🤮. I hadn’t contemplated that not everything is linked to stress and trauma, either, although some would beg to differ and it can certainly feel that way sometimes. Research around trauma, PTSD, inflammation, burnout, endo is still relatively new and it’s important not to get tunnel vision, as I have just learnt.

As I write this I can even feel the fear of judgment and righteousness that must be bubbling up from others. I can imagine the countless people tempted to reach out with 'the answer/ solution/ fix/support'. And although it will come from what they believe is a good place, it’ll most probably come across, belittling, shaming, condescending and righteous. Annnnd I’ve been that person, I’ve been in that saviour complex of wanting to fix, heal, save others in distress or physical illness.

The Shame We Don’t Realise We’re Carrying

As we talked through trauma, stress and inflammation, all the things I’ve studied, lived and taught, a heavy shame surfaced:

“If I had healed enough, maybe I wouldn’t be in this situation .”

And the thing is… that belief didn’t just come from the medical system ignoring me.

It came from wellness culture too.

There’s this pervasive narrative that:

🜂 Anger is stored in the hips

🌑 Back pain = lack of support

🧍‍♀️ Pelvic pain = blocked creativity or trauma

👣 Foot pain = fear of moving forward

🙄Bad juju= you manifested this in some shape or form

Cortisol & inflammation from stress that YOU couldn’t shift or heal no matter how many tools you tried.

Aka YOU NEED TO FIX THIS!

And while there can be wisdom in mind–body connection…

there’s a darker side:

Suddenly, pain becomes personal failure.

If our symptoms flare, we must be doing healing wrong.

If illness progresses, we must not be regulating well enough.

If trauma stays in the body, we must be lazy, blocked, or “stuck in our story.”

Many books and specialists have brought breakthroughs, but also can perpetuate the narrative that…

If your body is unwell, it’s now your sole responsibility to fix yourself and undo the illness and pain stored in your body and if you don’t, you’ve only got yourself to blame.

Try harder.

Fix yourself.

It’s on you.

Without even realising…

we begin to gaslight ourselves.

And that belief?

That is its own trauma.

Don’t get me wrong there are absolutely things you can change and do to try to support your health, but blaming yourself for ill health happening in the first place is not a great start, let that shit go. Maybe healing from a place of compassion not blame and shame, not spiritual bypassing and toxic positivity. It’s ok to be upset and angry at the systems that have failed you. It’s ok to grieve for your symptoms.

We forget the truth:

Trauma didn’t start with us.

The system failing us didn’t start with us.

Endometriosis sure as hell didn’t start with us.

So why have we been carrying the blame?

A New Chapter: Compassion Over Blame

Here I am.

Stage 4.

In pain.

And hopeful, for the first time in a long time.

I have a plan.

Surgery has given me a reset, for now.

I have support.

I have a doctor who sees me.

Medication is no longer a symbol of defeat, but of care and I’m embracing it.

And I am finally letting myself believe:

This is not my fault 🥹

Not my trauma.

Not my hormones.

Not my inflammation.

Not my endometriosis.

Not. My. Fault.

Even typing that feels radical.

To Anyone Reading This Who Blames Themselves for any kind of illness…

You didn’t cause your illness.

You aren’t responsible for the systems that failed you.

You are not a project to be fixed.

Your worth is not measured by wellness.

You deserve help now… not once you’ve proven you’re sick enough.

This Is My Next Chapter

One where I honour the work I’ve done…

…but release the belief that I must be the cure.

I only get one body.

She has carried me through hell.

And she deserves care and compassion. Not criticism or judgement and the weight of responsibility to heal myself alone.

With help.

With science.

With gentleness.

With knowledge.

With compassion.

With hope.

It’s not my fault.

And it’s not yours either. ❤️

After talking with my therapist, I admitted that I needed an outlet for my anger — a way to channel it into something good, into change.I thought of the women who are too burnt out, busy, exhausted, in pain, raising children, or simply too fatigued to have the energy to fight the endo fight.

So this I vow: to fight on behalf of all women.I’m someone who, for now, has decided not to have children, despite my endo, and I choose to pour my creative energy into advocating for women who are literally dying on these waitlists, who are not being taken seriously, whose health and voices deserve to be heard.

This is just the beginning. Watch this space.

P.S. This is one of the many reasons to be mindful when asking someone if they have children or want them — or even when starting a conversation about children at all. It’s not black and white. There are so many factors that shape someone’s choices or circumstances around having children; chronic pain and health are just a couple of them. Be careful not to presume.

For anyone suffering or living with Endometriosis, Adenomyosis, PMDD please go to https://nzendo.org.nz. For more info and support, they also offer support groups, events and seminars.

I just signed the campaign: Women, girls & people assigned female at birth with Endo deserve better: Demand guideline review now

It would mean a lot to me if you could also add your name to this important issue. Every name that is added builds momentum around the campaign and makes it more likely for us to get the change we want to see.

Will you join me by taking action on this campaign?

https://our.actionstation.org.nz/petitions/people-with-endometriosis-deserve-better-demand-review-of-the-national-guidelines?share=35916ff6-5e9a-48ad-bd33-51ad68969a6c&source=forwarded_email&utm_medium=&utm_source=forwarded_email

After you've signed the petition please also take a moment to share it with others. It's super easy – all you need to do is forward this email.

Thank you!

Lauren