Endometriosis: The Silent Public Healthcare Crisis
In light of Endometriosis Awareness Month, I want to dedicate this piece to sharing my story — my battle with endometriosis. This isn’t just a personal account; it’s a testament to a deeply flawed system that continues to fail countless women* suffering from this condition.
*By saying “women” in this essay I am including anyone with a female experience who may be affected by endo, including non-binary womb folk.
An image showcasing dated endometriosis investigative surgery scars. Taken from “Why People With Endometriosis Are Photographing Their Scars“ written by Erika W. Smith for Refinery29 in 2019.
The Beginning: My Youth Marked by Pain
My battle began at the age of twelve — fourteen years ago — when I got my first period. That very night, I passed out on the couch from the intensity of the pain, despite my mother having given me a spasmodic.
What followed were years of seeking help, searching for answers, and being repeatedly dismissed and gaslit. My mother and I visited multiple specialists across different countries — gynecologists, endocrinologists, gastroenterologists — hoping someone would provide guidance. While the latter two fields failed to offer any clear answers, attributing my pain to "stress," the gynecologists were the first layer of a deep systematic problem. Most doctors weren’t equipped to help — not because they didn’t care, but because the system failed them too. A lack of proper education, training, and funding left them unprepared for cases like mine.
Dismissal and Gaslighting in the Medical System
The responses we received from gynecologists were nothing short of infuriating:
“Your daughter is perfectly healthy. Try popping an ibuprofen.”
“She’s young. She’s probably just not used to the pain.”
“Perhaps the shape of her uterus or cervix makes it harder for the blood to pass through.”
“As soon as she becomes sexually active or gives birth, the issue will resolve itself.”
What the actual f**k? I was twelve.
I spent my pre-teen years in agony, enduring a level of pain no child should have to experience. My mother was sympathetic, but she didn’t know how to help me either. And that was the real issue — the system itself. Medical professionals are simply not equipped to handle complex conditions like endometriosis.
Taking Matters into My Own Hands
By the time I turned sixteen, I had enough. I dived headfirst into research, learning the terminology, dissecting medical studies, and — shockingly — self-diagnosing. When I held up my research in my hands, I knew: I have endometriosis. And there is no cure.
From this point on, I became doctors' worst nightmare. I walked in with printed lists of endometriosis symptoms, slammed them on their desks, refusing to be brushed aside. I demanded proper examinations.* I even went so far as to claim I wouldn’t leave the room until they took me seriously. Yet, nothing changed. No amount of logic, evidence, or persistence was enough to budge them toward a diagnosis.
"Dr. Google isn’t a real doctor." Sure. But neither, it seemed, were the ones who dismissed me.
(*I was denied an internal vaginal examination because I was "not sexually active", and external ultrasounds were not advanced enough to detect endometriosis lesions at the time. To make matters worse, most doctors defined "sexually active" solely as heterosexual penetrative sex, which, as a lesbian woman, I find infuriating.)
A Breakthrough — Or So I Thought
More months passed. More pain endured. Finally, during yet another external ultrasound screening, a doctor said the words that shifted the stagnancy: “Your ovary is fixated behind your uterus and it’s not moving.”
Bingo. I had proof. This could be caused by an endometriosis lesion, so I grabbed that doctor’s examination report and ran with it. For the first time, I had a case. Doctors finally began to consider endometriosis a possibility.
Their solution? Birth control (BC). I was prescribed a combined pill, then switched to progesterone-only as the first gave me wicked migranes. The symptoms improved — temporarily, as it was only masking the underlying cause. As soon as I stopped BC, the pain returned, worse than before. Now, it wasn’t just during my period — it was throughout my entire cycle.
Searching for Alternative Solutions
More years passed, more research was done. I explored herbal medicine, cannabis, dietary changes, yoga, and addressing my health anxiety. I was desperately searching for anything that would help me manage the pain.
Diagnosis at Last
London, 2023, I was 25 years old when I was officially diagnosed: Stage 3 endometriosis and an endometrioma (chocolate cyst) on my right ovary. I was prescribed harsh hormonal therapy — Dienogest — and told I would need to take it for the rest of my life.
Around that same time, I underwent uterine polyp removal surgery and an appendectomy. Post-surgery, I received yet another plot twist: I did not, in fact, have an endometrioma. What I had was an enlarged follicle — one that wasn’t developing properly and had taken up half the size of my ovary. Further testing revealed yet another diagnosis: PCOS (Polycystic Ovary Syndrome).
Finding the Right Doctor
Saint-Petersburg, 2024: after years of frustration, I finally found the gynecologist I could trust — a young, queer-friendly specialist I discovered through online queer chats. We adjusted my treatment plan. She informed me of the risks of Dienogest, including its impact on bone mass loss (which the previous doctor failed to mention), and together we opted for a different route: Implanon, a long-term hormonal implant into the arm, which will last until 2027.
Moving Forward
My journey is far from over, I still have a long road ahead of me. Endometriosis and PCOS continue to shape my daily life. But after fourteen years of fighting, I have emerged from the first battle. Now, my focus is on adjusting my lifestyle to be more serene, reconnecting with my body, and exploring herbal alternatives to conventional treatments. I know that hormonal therapy continues to mask endometriosis development, but at least it allows me to catch my breath and actually enjoy my life while I discover alternatives, without the horrid side effects.
I believe in myself. I believe in the incredible women who stand beside me in this fight. I believe in the power of sharing our stories for the whole world. This March, during Endometriosis Awareness Month 2025, I want to make sure my story is heard — and remembered.
The Change To The System We Need
I want my fellow endo-warriors to live freely. I want the gaslighting to stop. I want better medication, better diagnostic tools, better training for medical professionals, and shorter waiting times. I want endometriosis and PCOS to be fully covered under free healthcare. I want private healthcare to be more accessible.
And most of all, I want the entire medical industry to rethink its approach to women’s health, starting now, as there is no more time left to waste — we are already at a crisis point.
Women are not lying. We are not exaggerating. We are not seeking attention. We want to be taken seriously and to live our lives — without constant pain and continuous dismissal of our symptoms.
The Summary of My Battle with Endometriosis
14 years of agony
Lesions across my abdomen
BC and hormonal therapy side effects, including bone mass thinning
Burn marks from constant heat packs
Skin irritation from TENS machines
Missed countless events due to debilitating pain
10 years of gaslighting before being taken seriously
Thank you for reading my story. Please share this to spread awareness, to demand better healthcare for us all, and most importantly — listen to the women around you.
By standing together, we have the power to change the system.
