What We Wish the World Understood About Living With Endometriosis
(Spoiler: It’s Not Just “Bad Periods” and Mood Swings)
The Reality Check: It’s Not Just Period Pain
If one more person says “I get bad cramps too,” we’re sending them a heat pack and a heartfelt “go away”.
Endometriosis isn’t “just cramps.” It’s a chronic, inflammatory condition where tissue similar to the uterine lining decides your uterus isn’t enough real estate and sets up shop elsewhere — like your ovaries, bladder, or intestines. Imagine a body where pain is the soundtrack, bloating is the fashion, and fatigue is your emotional support animal.
It’s not rare, it’s not dramatic, and it’s definitely not all in our heads.
The Daily Struggle You Don’t See
Endo doesn’t clock off at 5pm. The pain lingers like an unpaid intern who never leaves.
Some days it’s dull. Other days it’s like being punched from the inside while smiling through a meeting.
We look “fine,” because we’ve mastered the art of pretending. But behind every “I’m okay” is a heat pack, painkillers, and a quiet mental negotiation about whether getting out of bed is worth it.
And that “endo belly” you see? No, we’re not pregnant — just perpetually betrayed by our own organs.
We’re not dramatic — we’re just living in a body that screams even when it whispers.
The Medical Circus (a.k.a. Diagnosis Bingo)
If we had a dollar for every time someone said “It’s just stress,” we’d have our own research fund by now.
Most of us spend years — sometimes a decade — being bounced around by doctors, misdiagnosed, or dismissed. The average time to diagnosis is 7–10 years. That’s longer than my first marriage.
And the gender bias in medicine? Chef’s kiss. Women’s pain is still under-researched, under-treated, and under-believed. We don’t need another prescription for the Pill; we need systemic change and medical professionals who listen the first time.
Relationships, Work, and ‘Functioning’
Endo doesn’t politely stay in one part of life. It crashes every party.
We cancel plans, not because we’re flaky, but because standing upright feels like an extreme sport.
We take sick days, not because we’re lazy, but because the pain is paralysing.
We miss out on social events, intimacy, and sometimes even career opportunities — all while people wonder why we “don’t just push through.”
We’re not ghosting you. Our uterus just double-booked us with pain.
The Emotional Load (and the Rage)
There’s the pain — and then there’s the rage.
The frustration of being dismissed. The exhaustion of constantly explaining yourself. The guilt of feeling unreliable.
We carry it all with a side of dark humour, because if we don’t laugh, we might actually combust.
Living with endo is like juggling chainsaws while smiling for the crowd. Some days you feel powerful. Other days you’re one “have you tried yoga?” away from a public meltdown.
If you’re tired, angry, or crying into your heat pack — you’re not alone. You’re part of a very sarcastic, very strong sisterhood.
What We Wish People Did Instead
If you really want to help — start here:
Believe us. The first time. Without question.
Stop comparing pain. Your period ≠ our daily endurance test.
Offer practical support.“Want me to drop off food?” > “Have you tried essential oils?”
Learn the basics.Awareness is free — ignorance costs lives.
Sometimes the most powerful thing you can say is, “That sounds awful. How can I help?”
The Shebie Mic Drop
Endometriosis doesn’t define us — but it’s shaped who we are: tougher, louder, and armed with sarcasm sharp enough to cut through red tape.
We’re not asking for sympathy. We’re demanding awareness, better research, and a world that listens without making us beg for it.
So believe us. Support us.
And maybe, hand us a snack — we’ve earned it.
Written by Kristy The Shebie Foundation*
Because awareness doesn’t have to be polite — it just has to be heard.
#EndoAwareness #ShebieSays #LaughThroughThePain
Disclaimer
The Shebie Foundation provides educational and community-based content for awareness purposes only. This article is not intended to replace professional medical advice, diagnosis, or treatment. Always seek the guidance of a qualified healthcare provider regarding any questions you may have about endometriosis or other health conditions.
Understanding Histamine & Endometriosis — What Every Woman Should Know
By Kristy | The Shebie Foundation
Introduction
If you’re living with Endometriosis, you’ve probably heard about inflammation, hormone cycles, and diet triggers. But one lesser-known factor that could be intensifying your symptoms is histamine — a natural compound in your body that plays a key role in inflammation and immune response.
Recent research suggests histamine might amplify the pain and inflammation linked with Endometriosis — and by understanding it, you may gain one more tool to manage your health.
What Is Histamine?
Histamine is a naturally occurring compound involved in your immune system, digestion, and nervous system. It’s also found in many common foods.
When histamine levels rise, the body increases blood flow, tissue swelling, and nerve sensitivity — all things that can make Endo pain worse.
According to Endo-App, histamine is:
“A messenger substance that affects inflammation, blood flow, and pain perception.”
How Histamine Impacts Endometriosis
If you have Endometriosis, histamine may act like fuel on the fire. Here’s how:
Increases inflammation: Histamine boosts blood flow and swelling — worsening inflammation in affected tissue.
Amplifies pain: It affects nerve pathways and can heighten pain sensitivity.
Influences hormones: Histamine can trigger oestrogen release, which drives Endo growth.
Affects mood: High histamine levels are linked to anxiety and depression, both common in chronic pain conditions.
While histamine may not cause Endometriosis, it could definitely intensify symptoms.
Foods & Habits That Increase Histamine
Histamine is found naturally in certain foods and released by your immune system in response to stress, allergens, or hormones.
Common histamine-rich or histamine-releasing foods:
Aged or fermented foods — e.g., cheeses, smoked meats, sauerkraut, kimchi
Alcohol and fermented beverages
Tomatoes, spinach, chocolate, nuts, strawberries
Processed meats, flavour enhancers, and yeast extracts
Other triggers:
Some medications can release histamine or reduce your ability to break it down (for example: aspirin, diclofenac, certain antibiotics, or cardiovascular drugs).
Never adjust medication without speaking to your doctor.
Practical Ways to Support Your Body
If you think histamine might be a factor in your Endo symptoms, here’s where to start:
Keep a food diary. Track meals, symptoms, and pain patterns — this helps identify hidden triggers.
Reduce, don’t eliminate. Aim to moderate high-histamine foods instead of cutting everything out.
Choose fresh over aged. Fresh meats, fish, and dairy generally contain less histamine.
Speak with a professional. Work with your Endo-specialist or a nutritionist to design a sustainable plan.
Listen to your body. You’re the expert in what feels right for you — not every “trigger” affects everyone the same way.
Why This Matters
Understanding the histamine–Endometriosis connection empowers you to take control of your own health narrative.
At The Shebie Foundation, we believe women deserve to be heard, believed, and educated about every piece of their health puzzle — including how diet and inflammation affect their bodies.
By paying attention to histamine, you may uncover a missing link that helps you feel stronger, clearer, and more in control of your journey.
Disclaimer
This article is for educational and awareness purposes only and does not constitute medical advice. Always seek guidance from a qualified healthcare professional before making dietary or treatment changes.
Open letter to my Doctors
Kristy’s journey through Stage 4 Endometriosis is one of strength, frustration, and determination. From being dismissed by doctors to finally finding the right specialist, her open letter sheds light on the systemic gaps in women’s healthcare — and the hope for a future where women are truly heard.
Dear Gynecologists A & B,
I know you see hundreds of patients every year — women with stories of heavy, painful periods. I was one of them.
Our very first appointment ended with a scheduled surgery — an ablation of my uterus and removal of my tubes — to give me some relief. The imaging had shown a large fibroid in my uterus, and the painful, heavy periods were just not sustainable. Given that I had completed my family and was 39, this plan made sense.
After my first surgery, you diagnosed me with Stage 4 Endometriosis, Adenomyosis, and “kissing ovaries”. You explained that it involved my uterus, bowel, and bladder, and that during surgery you were only able to separate a partial amount of my organs — it was just too much.
At our follow-up, you showed me images of my organs completely covered in endometriosis. We agreed to monitor things and see how it went.
When Things Got Worse
Eighteen months later, my pain was still concerning, so I made another appointment to discuss options. But COVID-19 lockdowns made everything harder — delaying the help I desperately needed.
When I finally saw you again, you asked if I had private health insurance. I said no. You then handed me a prescription for the pill, saying it was the best option for now. But it wasn’t. It would not have helped my quality of life at all.
I left your rooms furious — and determined to take control. That day (April 2021), I began researching private health options.
The Breaking Point
In October 2021, I had a large ovarian cyst rupture on my right side. A month earlier, my appendix had ruptured — later found to be caused by endometriosis infiltration. I went straight to Knox Private, where I was connected with another gynecologist.
He scheduled a diagnostic laparoscopy and discovered extensive endometriosis, adenomyosis, and PCOS, with my bladder and bowel involved again. Afterward, he suggested a full hysterectomy, but first wanted me to inject myself with a $300-per-month drug for three months to shrink the endo cells. It would plunge me into menopause to make surgery easier.
When I said I didn’t want to go into menopause, his response was:
“What’s a couple of hot flushes?”
My gut screamed this was wrong. So I searched for a second opinion — and typed into Google:
“Best endo surgeon Melbourne.”
Finding the Right Doctor
That search led me to Dr. S My appointment was the following Tuesday.
I walked into his office expecting, once again, not to be heard. But after explaining my journey, he looked at me and said:
“I’m so sorry it’s taken you this long to find me.”
At that moment, I broke down.
He added:
“It would have been so simple for your original gynecologist to refer you to me. We wouldn’t be in this situation now.”
For the first time, I felt truly seen and heard.
Dr. S reviewed my scans and recommended a full pelvic clean-out. He immediately booked me in for January 18, 2023, and gave me scripts to keep me comfortable while I waited. He also referred me to a colorectal surgeon and for an in-depth ultrasound before surgery.
Those six months of waiting were tough — I found myself in the emergency room more often than I’d like. One ER gynecologist even told me that my endo would “resolve over time.”
OMG.
The Turning Point
Finally, surgery day arrived. I told Simon that I was done — I didn’t want any more surgeries — so to take it all, including my ovaries. That decision plunged me into surgical menopause, but that’s a story for another time.
The best part? I woke up from a four-hour surgery with zero endo pain — and that was the best feeling in the world.
What I’ve Learned
This journey taught me some powerful lessons:
Advocate for yourself. No one else will do it like you can.
Get basic private health insurance. It’s worth it — it covers endometriosis.
Trust your gut. If something feels wrong, it probably is.
Know your specialist. If you’re sitting in a gynecologist’s waiting room and see pregnant patients — they’re not an endo specialist. Leave immediately.
Leave your Ovaries if they are healthy . Menopause is fucked!
Hysterectomy is not always the answer.
Get Eductaed about your condition and what other side effect you should be aware of.
My Hope
My hope is that ER doctors, GPs, and gynecologists are better educated to refer women to the right specialists sooner.
Through The Shebie Foundation, I’ve found strength in sharing my story. We’re building a space where women are heard, believed, and valued in every conversation about their health.
So, to all gynecologists, GPs, and emergency room doctors — I write this not in anger, but in hope.
That one day, every woman who walks into a clinic will be met with care that listens first and refers second.
Because too often, it’s the same story: women feeling unheard, dismissed, and taught to normalize their pain.
Disclaimer
This blog post reflects a personal health experience and is shared for awareness and advocacy purposes only. It is not medical advice. Every individual’s medical situation is unique, and you should always consult a qualified healthcare professional before making any decisions about your health or treatment.